Re: Help with D.I.S.D./programs for autism

May 2, 2006

Parents, there is a lot of confusion about the difference between diagnosing

and qualifying for services.

Please be aware, that SCHOOL DO NOT DIAGNOSIS. Schools determine that

your child meets THEIR criteria for special ed services under one of THEIR

labels, one of which is autism, and their criteria are often not the same as

a medical doctor's. You cannot take a doctor's diagnosis to the school and

ask them to accept it. There are many people on this list who can attest to

that. A developmental pediatrician who works as a part of a team and spends

day in day out helping to diagnosis kids recently shared that in the past

the schools tend to select and call everything autism. These days they've

shifted and are calling very few things autism.

The only person who can DIAGNOS your child is a psychologist or a

psychiatrist (and usually not the school one).

This may seem like splitting hairs, but it is very important in the services

game (racket). You have to know which gatekeeper you are dealing with.

S.

Help with D.I.S.D./programs for autism

Hello there:

We are new members to this group. Our 3 y/o son was diagnosed last

week by the D.I.S.D. (Dallas Independent School District, for those

not in the area), and we are in the beginning stages of

discovering/navigating the public school system's programs for him.

Already we are disenchanted with the " classroom " programs that they

have to offer, and are trying to figure out what our options within

the school system and outside of it (private).

If anyone has had experience in negotiating with the D.I.S.D. as it

pertains to Special Ed., we would appreciate you sharing your

experience with us.

Because it is so late in the school year, and the opportunity

to " visit " other programs during this year is quickly running out,

time is of the essence.

If your comments are too much to type, we understand, and if you are

willing to provide your phone number, we could give you a call.

Thank you so much for your consideration.

Sincerely,

The Weber Family

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

May 2, 2006

If you got a diagnosis from MHMR after doing a DMR, would the school

recognize that?

Help with D.I.S.D./programs for autism

>

> Hello there:

>

> We are new members to this group. Our 3 y/o son was diagnosed last

> week by the D.I.S.D. (Dallas Independent School District, for those

> not in the area), and we are in the beginning stages of

> discovering/navigating the public school system's programs for him.

>

> Already we are disenchanted with the " classroom " programs that they

> have to offer, and are trying to figure out what our options within

> the school system and outside of it (private).

>

> If anyone has had experience in negotiating with the D.I.S.D. as it

> pertains to Special Ed., we would appreciate you sharing your

> experience with us.

>

> Because it is so late in the school year, and the opportunity

> to " visit " other programs during this year is quickly running out,

> time is of the essence.

>

> If your comments are too much to type, we understand, and if you are

> willing to provide your phone number, we could give you a call.

>

> Thank you so much for your consideration.

>

> Sincerely,

> The Weber Family

>

> Texas Autism Advocacy

> www.TexasAutismAdvocacy.org

>

> Texas Disability Network

> Calendar of Events

> www.TexasAutismAdvocacy.org

>

May 2, 2006

makes a great point. I am living proof that you cannot go by what the

schools tell you only. My older son was diagnosed PDD-NOS by a developmental

pediatrician (MD) and a psychologist and a neurologist BUT our school district

still says he only has a speech delay. They would NEVER accept the " autism

spectrum " label and we all know why that is! So when I hear parents say " well

the school said... " I just cringe. Please, as parents we all want to hear it's

not as bad as it really is, which schools (at least in our great state of Texas)

are great at playing up to that. But you are doing your child a disservice to

not get other opinions, I know it can be expensive, heartbreaking and

exhausting, but you owe it to your child. I shudder to think what my son would

be like today if he had only had PPCD and speech therapy through our school for

the past two years. This child who only needed " speech " has endured intensive

ABA therapy, speech, OT, PT, craniosacral, hippotherapy, AIT, a year at Westview

school, a year at a " typical " preschool with a shadow, social skills therapy,

GFCF diet, supplements given all day long and numerous developmental tests.

Would we, as parents, have lived this life if our son was not on the spectrum? I

swear, schools act like we want our kids to be more messed-up than they really

are so we can have no life, give up our savings and drive all over town for

fun!!!

Help with D.I.S.D./programs for autism

Hello there:

We are new members to this group. Our 3 y/o son was diagnosed last

week by the D.I.S.D. (Dallas Independent School District, for those

not in the area), and we are in the beginning stages of

discovering/navigating the public school system's programs for him.

Already we are disenchanted with the " classroom " programs that they

have to offer, and are trying to figure out what our options within

the school system and outside of it (private).

If anyone has had experience in negotiating with the D.I.S.D. as it

pertains to Special Ed., we would appreciate you sharing your

experience with us.

Because it is so late in the school year, and the opportunity

to " visit " other programs during this year is quickly running out,

time is of the essence.

If your comments are too much to type, we understand, and if you are

willing to provide your phone number, we could give you a call.

Thank you so much for your consideration.

Sincerely,

The Weber Family

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

May 2, 2006

:

Thank you for your response – but it leads me to my next question (again,

remember that we’re “new to the game”):

To whom would you take your child to, for an “official” diagnosis? A

developmental pediatrician? Pediatric neurologist? Child psychologist? It

’s sad, but we really don’t know 1) whether he needs to see someone, 2) if

seeing a professional for a diagnosis would include any type of

recommendations for treatments/therapies, and 3) whether an outside

diagnosis and/or recommendations for treatment would make a difference to

the school system or not.

We actually took him to a pediatric neurologist when he was two, and the doc

basically asked us why we were there…….he said he couldn’t diagnose anything

at that age, and basically the only thing he offered was genetic testing,

which we didn’t feel was necessary at that time. In addition, our (former)

ECI coordinator doesn’t seem to be encouraging a doctor visit of any kind –

she doesn’t think it would be of any help to us, either with the school

district or with figuring out what treatments/therapies he needs.

I would welcome your experiences and opinions.

BTW, our son is verbal, interactive – but is exhibiting some symptoms of

ASD – reciting rote words and phrases, delay in social communication,

echolalia, etc.

Thank you in advance for your responses,

Weber

Re: Help with D.I.S.D./programs for autism

makes a great point. I am living proof that you cannot go by what

the schools tell you only. My older son was diagnosed PDD-NOS by a

developmental pediatrician (MD) and a psychologist and a neurologist BUT our

school district still says he only has a speech delay. They would NEVER

accept the " autism spectrum " label and we all know why that is! So when I

hear parents say " well the school said... " I just cringe. Please, as

parents we all want to hear it's not as bad as it really is, which schools

(at least in our great state of Texas) are great at playing up to that.

But you are doing your child a disservice to not get other opinions, I know

it can be expensive, heartbreaking and exhausting, but you owe it to your

child. I shudder to think what my son would be like today if he had only

had PPCD and speech therapy through our school for the past two years. This

child who only needed " speech " has endured intensive ABA therapy, speech,

OT, PT, craniosacral, hippotherapy, AIT, a year at Westview school, a year

at a " typical " preschool with a shadow, social skills therapy, GFCF diet,

supplements given all day long and numerous developmental tests. Would we,

as parents, have lived this life if our son was not on the spectrum? I

swear, schools act like we want our kids to be more messed-up than they

really are so we can have no life, give up our savings and drive all over

town for fun!!!

Help with D.I.S.D./programs for autism

Hello there:

We are new members to this group. Our 3 y/o son was diagnosed last

week by the D.I.S.D. (Dallas Independent School District, for those

not in the area), and we are in the beginning stages of

discovering/navigating the public school system's programs for him.

Already we are disenchanted with the " classroom " programs that they

have to offer, and are trying to figure out what our options within

the school system and outside of it (private).

If anyone has had experience in negotiating with the D.I.S.D. as it

pertains to Special Ed., we would appreciate you sharing your

experience with us.

Because it is so late in the school year, and the opportunity

to " visit " other programs during this year is quickly running out,

time is of the essence.

If your comments are too much to type, we understand, and if you are

willing to provide your phone number, we could give you a call.

Thank you so much for your consideration.

Sincerely,

The Weber Family

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

May 2, 2006

Hello, to all you wonderful caring parents, I'm on again and just voicing my

knowledge and experiences, since I've pasted the younger years and all its

wonderful trying and challenging stages. Well, as for the school systems

most of them do not have a set diagnostion per say, the one is that it has

to be a certified child nuerologist whom the district uses they school

district pays for this now this is not to make you scare but its always best

to go ahead take your child then take him to another child nuerologist and

also document every evaluation and have them sent a copy to your school so

when you meet they are fully aware of what is going on with your child. Make

sure you have copies of everything (I'd place in a large 3 ring binder so

you can use it as a reference, also any type of past reports that will help

them and you explain to them what is best for your child and what type of

care or modifications are needed). If this means extra time for leaving

class rooms for lunch to avoid crowds in the hall, or an aide to help your

child unpack his back pack, or help getting to the areas your child needs to

go, also the type of seating, and assistance in redirection of keeping your

child on task,and to try to also include and special comments (such as had a

great morn or had trouble starting to read, or finished work quickly, also

make sure planner or work sheets are make to let you know what they did and

what needs to get done.) One major point here is to document everything no

matter how big or small you never know when your going to need that

information and include days inschool and days out or if late also if

medical excuse from dr. office. Everything is to be kept in a file and

updated incase anyone every questions you and you can cross reference as a

special needs parents your job is twice a hard because your always

monitoring and documenting and keeping on top of things if at any point the

IEP that are placed in an ARD are not followed you do have recourse... Well

once again I keep going on and on its hands on trial, we must remember that

each child is special each child is different even if sometimes some of the

thing they do are the same each child has its own way of learning and doing

things...And you are your Child's best Advocate, don't ever let anyone tell

you they know your child better than you do or what's best for your child.

Hope this helps of course once again this a just my opinion for what I've

gone through and done and will continue for my child...Good Luck....

Anita R

Help with D.I.S.D./programs for autism

>

> Hello there:

>

> We are new members to this group. Our 3 y/o son was diagnosed last

> week by the D.I.S.D. (Dallas Independent School District, for those

> not in the area), and we are in the beginning stages of

> discovering/navigating the public school system's programs for him.

>

> Already we are disenchanted with the " classroom " programs that they

> have to offer, and are trying to figure out what our options within

> the school system and outside of it (private).

>

> If anyone has had experience in negotiating with the D.I.S.D. as it

> pertains to Special Ed., we would appreciate you sharing your

> experience with us.

>

> Because it is so late in the school year, and the opportunity

> to " visit " other programs during this year is quickly running out,

> time is of the essence.

>

> If your comments are too much to type, we understand, and if you are

> willing to provide your phone number, we could give you a call.

>

> Thank you so much for your consideration.

>

> Sincerely,

> The Weber Family

>

> Texas Autism Advocacy

> www.TexasAutismAdvocacy.org

>

> Texas Disability Network

> Calendar of Events

> www.TexasAutismAdvocacy.org

>

May 5, 2006

We went to the Kennedy Kreiger Institute in Baltimore for a very through

eval at age 3. They recommended treatment (ABA) and we were seen by several

(I think 6?) difference specialists. I would recommend genetic testing be

done by a DAN doctor to determine what medicines work best and if you child

makes glutathione for instance. My child does not. This causes him not to be

able to excrete metals from his body. I wish I would have known this piece

was missing at birth and we could have begun supplementation before

vaccination. Sounds kind of like a rally cry....Trina