Re: new to all of this

August 3, 2012

,There are several therapy centers sone what close to you if you are referring to ABA. Don't be afraid to ask them if they have scholarships. I also just applied for a scholarship through PMR charity nag got one month of therapy paid for which is more than what we had.I live in Crowley and we have an organization that has support groups and family fellowships. If you want to know more get back with me.Sent from my iPhone

Hello,

My name is and I am new to autism. My son was diagnosed on the 20th of July. I still feel like I have no idea what to do. I also have a daughter who is being evaluated as well on the 10th. So far I feel we have fell through every crack there is to fall through. We have privately funded insurance which did not opt-in for the Texas mandate. The therapy I was told he needed is way more than I can afford. My son is 5. We had concerns when he was 3 but the original doctor said he was too social because he said hi to him. So we missed 2 precious years. The doctor he saw this time said he didn't think the school system could give him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be kindergarten. They are talking inclusion with an aide. He can barely count to 5. I don't know what to do.

August 3, 2012

Welcome, , to the club no one wants to be a member of. First and foremost, know that autism is NOT a death sentence. Many of our kids recover and most improve. I feel like my son gets a tiny bit better every day (of course, the teen years are coming so it may get worse, but I'm optimistic).

Second, get ready to do a lot of research! You've already found out the hard way that most doctors do not fully understand autism and even less on how to treat it. It is up to you to do the research and find out about different therapies, diets, supplements, theories on causation, etc. and determine what will work best for your family. You've already started by joining this group and here are a couple others I find helpful:

beyondgfcf

abmd

and this is a very helpful website for getting you acclimated to the autism world: http://www.tacanow.org/

As you can see, I have chosen the biomedical route for my son. It is NOT easy but it has worked for us. He is on a gluten-free, casein-free, soy-free diet, and takes several supplements, like MB12, C, D3, and a good multi from Kirkman's. I also just started him on Armour Thyroid as I found out that he is hypothyroid (like me, and many autistic kids). He does not take any other prescription medicine, however. Also, he has been taking speech therapy through the school system since he was almost 5. He also went to a private speech therapy and a little bit of OT until my insurance no longer covered it.

Third, I hope you are a fighter because you'll have to fight for every single thing your son (and possibly daughter) needs. You need to start with the schools and getting them to provide the therapies he needs. If he can do inclusion in a regular class room, that might be best. I find that my son does better in that environment. He is mainstreamed and had a full time para for the first 4 years. Now he has a part time aide in the classes he needs the help with. He is fine in math and band but needs extra help in any class that involves a lot of reading. He is going into 7th grade now and I'm amazed at how well he has adjusted to middle school. Also, you'll need to familiarize yourself with the loopholes of insurance so that they will pay for what he needs. There are many people on this board who are much more informed about that and

medicaid and other benefits than I am.

Fourth, remember you are not alone. Unfortunately, you have a lot of company. Another good resource for meeting with other, similar familes is the Houston autism meetup group. I don't have access to the link right now but it is something like www.autismhouston/meetup.com. I've gone a few of the arboretum walks and they have jump zone meetups and other activities all over Houston.

So, take a deep breath, have a lot of hope and get ready to work!

-Sandy

To: Texas-Autism-Advocacy Sent: Friday, August 3, 2012 10:07 AMSubject: new to all of this

Hello, My name is and I am new to autism. My son was diagnosed on the 20th of July. I still feel like I have no idea what to do. I also have a daughter who is being evaluated as well on the 10th. So far I feel we have fell through every crack there is to fall through. We have privately funded insurance which did not opt-in for the Texas mandate. The therapy I was told he needed is way more than I can afford. My son is 5. We had concerns when he was 3 but the original doctor said he was too social because he said hi to him. So we missed 2 precious years. The doctor he saw this time said he didn't think the school system could give him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be kindergarten. They are talking inclusion with an aide. He can barely count to 5. I don't know what to do.

August 3, 2012

I just realized you aren't in Houston but there might be other meetup groups in your area that are similar.

To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy > Sent: Friday, August 3, 2012 11:34 AMSubject: Re: new to all of this

Welcome, , to the club no one wants to be a member of. First and foremost, know that autism is NOT a death sentence. Many of our kids recover and most improve. I feel like my son gets a tiny bit better every day (of course, the teen years are coming so it may get worse, but I'm optimistic).

Second, get ready to do a lot of research! You've already found out the hard way that most doctors do not fully understand autism and even less on how to treat it. It is up to you to do the research and find out about different therapies, diets, supplements, theories on causation, etc. and determine what will work best for your family. You've already started by joining this group and here are a couple others I find helpful:

beyondgfcf

abmd

and this is a very helpful website for getting you acclimated to the autism world: http://www.tacanow.org/

As you can see, I have chosen the biomedical route for my son. It is NOT easy but it has worked for us. He is on a gluten-free, casein-free, soy-free diet, and takes several supplements, like MB12, C, D3, and a good multi from Kirkman's. I also just started him on Armour Thyroid as I found out that he is hypothyroid (like me, and many autistic kids). He does not take any other prescription medicine, however. Also, he has been taking speech therapy through the school system since he was almost 5. He also went to a private speech therapy and a little bit of OT until my insurance no longer covered it.

Third, I hope you are a fighter because you'll have to fight for every single thing your son (and possibly daughter) needs. You need to start with the schools and getting them to provide the therapies he needs. If he can do inclusion in a regular class room, that might be best. I find that my son does better in that environment. He is mainstreamed and had a full time para for the first 4 years. Now he has a part time aide in the classes he needs the help with. He is fine in math and band but needs extra help in any class that involves a lot of reading. He is going into 7th grade now and I'm amazed at how well he has adjusted to middle school. Also, you'll need to familiarize yourself with the loopholes of insurance so that they will pay for what he needs. There are many people on this board who are much more informed about that and medicaid and other benefits than I

am.

Fourth, remember you are not alone. Unfortunately, you have a lot of company. Another good resource for meeting with other, similar familes is the Houston autism meetup group. I don't have access to the link right now but it is something like www.autismhouston/meetup.com. I've gone a few of the arboretum walks and they have jump zone meetups and other activities all over Houston.

So, take a deep breath, have a lot of hope and get ready to work!

-Sandy

To: Texas-Autism-Advocacy Sent: Friday, August 3, 2012 10:07 AMSubject: new to all of this

Hello, My name is and I am new to autism. My son was diagnosed on the 20th of July. I still feel like I have no idea what to do. I also have a daughter who is being evaluated as well on the 10th. So far I feel we have fell through every crack there is to fall through. We have privately funded insurance which did not opt-in for the Texas mandate. The therapy I was told he needed is way more than I can afford. My son is 5. We had concerns when he was 3 but the original doctor said he was too social because he said hi to him. So we missed 2 precious years. The doctor he saw this time said he didn't think the school system could give him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be kindergarten. They are talking inclusion with an aide. He can barely count to 5. I don't know what to do.

August 3, 2012

Hi, . By law, school districts have to consider the least restrictive environment (LRE) with regard to placement and your son's Individual Education Program (IEP) is what determines LRE. When you go to the Admissions, Review, or Dismissal (ARD) meeting, They will review his present levels of academic and functioning performance (PLAAFP), develop IEP goals, and recommend placement. From your note, it appears they believe he can function in a mainstream classroom with inclusion support. This is the LRE for him at this point. Should he need additional support in the future, you and the other members of the ARD committee may meet again to consider this. The R part of ARD means that his progress will be reviewed annually but if you don't think he's progressing with regard to his IEP goals during this first year, you can request an ARD meeting to discuss this. You don't have to wait an entire year to meet. Hope this helps. S. G. Garza, Ph.D., LSSP, NCSPLicensed PsychologistProfessional Psychological Solutions, PLLC2821 W. RoadSuite 3APlano, TX 75023www.ppsdfw.com

I just realized you aren't in Houston but there might be other meetup groups in your area that are similar.

To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy > Sent: Friday, August 3, 2012 11:34 AMSubject: Re: new to all of this

Welcome, , to the club no one wants to be a member of. First and foremost, know that autism is NOT a death sentence. Many of our kids recover and most improve. I feel like my son gets a tiny bit better every day (of course, the teen years are coming so it may get worse, but I'm optimistic).

Second, get ready to do a lot of research! You've already found out the hard way that most doctors do not fully understand autism and even less on how to treat it. It is up to you to do the research and find out about different therapies, diets, supplements, theories on causation, etc. and determine what will work best for your family. You've already started by joining this group and here are a couple others I find helpful:

beyondgfcf

abmd

and this is a very helpful website for getting you acclimated to the autism world: http://www.tacanow.org/

As you can see, I have chosen the biomedical route for my son. It is NOT easy but it has worked for us. He is on a gluten-free, casein-free, soy-free diet, and takes several supplements, like MB12, C, D3, and a good multi from Kirkman's. I also just started him on Armour Thyroid as I found out that he is hypothyroid (like me, and many autistic kids). He does not take any other prescription medicine, however. Also, he has been taking speech therapy through the school system since he was almost 5. He also went to a private speech therapy and a little bit of OT until my insurance no longer covered it.

Third, I hope you are a fighter because you'll have to fight for every single thing your son (and possibly daughter) needs. You need to start with the schools and getting them to provide the therapies he needs. If he can do inclusion in a regular class room, that might be best. I find that my son does better in that environment. He is mainstreamed and had a full time para for the first 4 years. Now he has a part time aide in the classes he needs the help with. He is fine in math and band but needs extra help in any class that involves a lot of reading. He is going into 7th grade now and I'm amazed at how well he has adjusted to middle school. Also, you'll need to familiarize yourself with the loopholes of insurance so that they will pay for what he needs. There are many people on this board who are much more informed about that and medicaid and other benefits than I

am.

Fourth, remember you are not alone. Unfortunately, you have a lot of company. Another good resource for meeting with other, similar familes is the Houston autism meetup group. I don't have access to the link right now but it is something like www.autismhouston/meetup.com. I've gone a few of the arboretum walks and they have jump zone meetups and other activities all over Houston.

So, take a deep breath, have a lot of hope and get ready to work!

-Sandy

To: Texas-Autism-Advocacy Sent: Friday, August 3, 2012 10:07 AMSubject: new to all of this

Hello, My name is and I am new to autism. My son was diagnosed on the 20th of July. I still feel like I have no idea what to do. I also have a daughter who is being evaluated as well on the 10th. So far I feel we have fell through every crack there is to fall through. We have privately funded insurance which did not opt-in for the Texas mandate. The therapy I was told he needed is way more than I can afford. My son is 5. We had concerns when he was 3 but the original doctor said he was too social because he said hi to him. So we missed 2 precious years. The doctor he saw this time said he didn't think the school system could give him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be kindergarten. They are talking inclusion with an aide. He can barely count to 5. I don't know what to do.

August 3, 2012

School therapist say primary form of communication is sign. No one even speech

Therapist know sign. Child does only what I and home Therapist have taught him.

Do district have to provide sign in class for him to communicate. Klein ISD

T-Mobile. America's First Nationwide 4G Network

Sylvia Garza wrote:

>Hi, . By law, school districts have to consider the least restrictive

environment (LRE) with regard to placement and your son's Individual Education

Program (IEP) is what determines LRE. When you go to the Admissions, Review, or

Dismissal (ARD) meeting, They will review his present levels of academic and

functioning performance (PLAAFP), develop IEP goals, and recommend placement.

>

>From your note, it appears they believe he can function in a mainstream

classroom with inclusion support. This is the LRE for him at this point. Should

he need additional support in the future, you and the other members of the ARD

committee may meet again to consider this.

>

>The R part of ARD means that his progress will be reviewed annually but if you

don't think he's progressing with regard to his IEP goals during this first

year, you can request an ARD meeting to discuss this. You don't have to wait an

entire year to meet.

>

>Hope this helps.

>

>S. G. Garza, Ph.D., LSSP, NCSP

>Licensed Psychologist

>Professional Psychological Solutions, PLLC

>2821 W. Road

>Suite 3A

>Plano, TX 75023

>www.ppsdfw.com

>

>On Aug 3, 2012, at 11:40 AM, Huddleston

wrote:

>

>> I just realized you aren't in Houston but there might be other meetup groups

in your area that are similar.

>>

>> To: " Texas-Autism-Advocacy "

<Texas-Autism-Advocacy >

>> Sent: Friday, August 3, 2012 11:34 AM

>> Subject: Re: new to all of this

>>

>> Welcome, , to the club no one wants to be a member of. First and

foremost, know that autism is NOT a death sentence. Many of our kids recover

and most improve. I feel like my son gets a tiny bit better every day (of

course, the teen years are coming so it may get worse, but I'm optimistic).

>>

>> Second, get ready to do a lot of research! You've already found out the hard

way that most doctors do not fully understand autism and even less on how to

treat it. It is up to you to do the research and find out about different

therapies, diets, supplements, theories on causation, etc. and determine what

will work best for your family. You've already started by joining this group

and here are a couple others I find helpful:

>>

>> beyondgfcf

>> abmd

>>

>> and this is a very helpful website for getting you acclimated to the autism

world: http://www.tacanow.org/

>>

>> As you can see, I have chosen the biomedical route for my son. It is NOT

easy but it has worked for us. He is on a gluten-free, casein-free, soy-free

diet, and takes several supplements, like MB12, C, D3, and a good multi from

Kirkman's. I also just started him on Armour Thyroid as I found out that he is

hypothyroid (like me, and many autistic kids). He does not take any other

prescription medicine, however. Also, he has been taking speech therapy through

the school system since he was almost 5. He also went to a private speech

therapy and a little bit of OT until my insurance no longer covered it.

>>

>> Third, I hope you are a fighter because you'll have to fight for every single

thing your son (and possibly daughter) needs. You need to start with the

schools and getting them to provide the therapies he needs. If he can do

inclusion in a regular class room, that might be best. I find that my son does

better in that environment. He is mainstreamed and had a full time para for the

first 4 years. Now he has a part time aide in the classes he needs the help

with. He is fine in math and band but needs extra help in any class that

involves a lot of reading. He is going into 7th grade now and I'm amazed at how

well he has adjusted to middle school. Also, you'll need to familiarize

yourself with the loopholes of insurance so that they will pay for what he

needs. There are many people on this board who are much more informed about

that and medicaid and other benefits than I am.

>>

>> Fourth, remember you are not alone. Unfortunately, you have a lot of

company. Another good resource for meeting with other, similar familes is the

Houston autism meetup group. I don't have access to the link right now but it

is something like www.autismhouston/meetup.com. I've gone a few of the

arboretum walks and they have jump zone meetups and other activities all over

Houston.

>>

>> So, take a deep breath, have a lot of hope and get ready to work!

>>

>> -Sandy

>>

>> To: Texas-Autism-Advocacy

>> Sent: Friday, August 3, 2012 10:07 AM

>> Subject: new to all of this

>>

>> Hello,

>>

>> My name is and I am new to autism. My son was diagnosed on the 20th of

July. I still feel like I have no idea what to do. I also have a daughter who is

being evaluated as well on the 10th. So far I feel we have fell through every

crack there is to fall through. We have privately funded insurance which did not

opt-in for the Texas mandate. The therapy I was told he needed is way more than

I can afford. My son is 5. We had concerns when he was 3 but the original doctor

said he was too social because he said hi to him. So we missed 2 precious years.

The doctor he saw this time said he didn't think the school system could give

him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be

kindergarten. They are talking inclusion with an aide. He can barely count to 5.

I don't know what to do.

>>

August 3, 2012

Perfectly said Sandy. Graham-Garza,DDSlgrahamgarza@...Sent from my iPhone

Welcome, , to the club no one wants to be a member of. First and foremost, know that autism is NOT a death sentence. Many of our kids recover and most improve. I feel like my son gets a tiny bit better every day (of course, the teen years are coming so it may get worse, but I'm optimistic).

Second, get ready to do a lot of research! You've already found out the hard way that most doctors do not fully understand autism and even less on how to treat it. It is up to you to do the research and find out about different therapies, diets, supplements, theories on causation, etc. and determine what will work best for your family. You've already started by joining this group and here are a couple others I find helpful:

beyondgfcf

abmd

and this is a very helpful website for getting you acclimated to the autism world: http://www.tacanow.org/

As you can see, I have chosen the biomedical route for my son. It is NOT easy but it has worked for us. He is on a gluten-free, casein-free, soy-free diet, and takes several supplements, like MB12, C, D3, and a good multi from Kirkman's. I also just started him on Armour Thyroid as I found out that he is hypothyroid (like me, and many autistic kids). He does not take any other prescription medicine, however. Also, he has been taking speech therapy through the school system since he was almost 5. He also went to a private speech therapy and a little bit of OT until my insurance no longer covered it.

Third, I hope you are a fighter because you'll have to fight for every single thing your son (and possibly daughter) needs. You need to start with the schools and getting them to provide the therapies he needs. If he can do inclusion in a regular class room, that might be best. I find that my son does better in that environment. He is mainstreamed and had a full time para for the first 4 years. Now he has a part time aide in the classes he needs the help with. He is fine in math and band but needs extra help in any class that involves a lot of reading. He is going into 7th grade now and I'm amazed at how well he has adjusted to middle school. Also, you'll need to familiarize yourself with the loopholes of insurance so that they will pay for what he needs. There are many people on this board who are much more informed about that and

medicaid and other benefits than I am.

Fourth, remember you are not alone. Unfortunately, you have a lot of company. Another good resource for meeting with other, similar familes is the Houston autism meetup group. I don't have access to the link right now but it is something like www.autismhouston/meetup.com. I've gone a few of the arboretum walks and they have jump zone meetups and other activities all over Houston.

So, take a deep breath, have a lot of hope and get ready to work!

-Sandy

To: Texas-Autism-Advocacy Sent: Friday, August 3, 2012 10:07 AMSubject: new to all of this

Hello, My name is and I am new to autism. My son was diagnosed on the 20th of July. I still feel like I have no idea what to do. I also have a daughter who is being evaluated as well on the 10th. So far I feel we have fell through every crack there is to fall through. We have privately funded insurance which did not opt-in for the Texas mandate. The therapy I was told he needed is way more than I can afford. My son is 5. We had concerns when he was 3 but the original doctor said he was too social because he said hi to him. So we missed 2 precious years. The doctor he saw this time said he didn't think the school system could give him what he needs. We are in the Eagle Mountain Saginaw ISD. He would be kindergarten. They are talking inclusion with an aide. He can barely count to 5. I don't know what to do.

August 3, 2012

If I were starting out now, but had the benefit of knowing what almost 11 yrs has taught me, I would get my child's copper/zinc ration checked ASAP. Many of these children cannot regulate copper levels. High copper over time causes permanent damage to many organs, most importantly the brain. Then I would get the doc to order a Doctor's Data Hair Elements/Toxic Elements Hair test. Learn how (or there are moms here who can help you) to apply the " rules of counting " which determines whether your child has deranged mineral transport in his body. Deranged mineral transport points to mercury poisoning, as I know of no other thing that causes this in the human body.

You can also have the doc order an opiate peptide test (a urine test) to see if your child needs to be on the gluten, casein, and soy protein free diet.One other test s a blood test to check the neutrophil (a type of white blood cell) count.

If your child is mercury toxic, then I suggest you follow the AC Protocol fror low dose, frequent chelation which you can learn in a very easy to understand book called " Fight Autism and Win. " It was written by mothers of children with autism. Am ore technical book is by Dr. Andy Cutler himself and is called " Amalgam Illness. " The first book is available at fightautismandwind.com. You can find the second book at Amazon or at Dr, Cutler's website at www.noamalgam.com

If you decide to follow this protocol, most of the suplements you will need that are designed for this protocol can be found and www.everything spectrum.com.

Every child is different. My child was in self-contained at first as he was severe and non verbal. Then he was in inclusion with an aide. Then he was in inclusion with an aide but in resource for reading and math. My son has only been academically successful being home schooled. He learns one on one. Few schools want to provide things Like ABA and RPM, but if you can prove the child needs it or allow the child to go into their program and then you can prove no progress, then you may be able to win these things, but it is always a FIGHT, and few win these things without having to file Due Process or at least wind up in mediation, which means hiring a lawyer.

Sign your child up for EVERY possible list NOW: DADS, CLASS, MDCP (if he has asthma or other health issues). It can take over seven years to get form the bottom of the list to the top.

Your insurance may be required by law to cover ABA until your child is six. I do believe in an ABA approach for young children. We modified it and blended it with Floor Time, but I had to do it myself as we could not afford a formal ABA instructor.

Go in with your eyes wide open: Schools in Texas rank FIFTIETH in the nation for educating children with autism, and the only way your child will get what he needs is if YOU advocate effectively for him. Learn how. You need to read the books from Pete : " From Emotions to Advocacy " and " Special Education Law. " You will find www.wrightslaw.com a valuable tool over the coming years.

Most DAN physicians do not support AC Protocol as it is relatively inexpensive, so they cannot make money off it. Whatever you do, DO not get talked into doing IV chelation. My son suffered horrible delayed reactions to this and some regressions. By far, biomedical intervention and using the AC Protocol have been THE BEST things we ever did for our child. He has regained all forms of speech and is now very high functioning, but emotionally and academically delayed due to time wasted trusting the wrong people. He is catching up. In a year and a half of home schooling, he has gained almost four years academically, so we are very hopeful about his future.

For academics, you may want to read " Understanding Autism through the Rapid Prompting Method, " and Soma has since published a curriculum guide to go with the program. I was skeptical at first, but this has proved to be the way to go with our son.

There is so much more you will need to learn and know, but we are all sisters of circumstance now and here to help each other.God Bless,Haven

August 4, 2012

Hello ,

Others have posted a lot of info, so I'll just give a general principle that

I've learned over time... EVERY KID IS DIFFERENT. So you have to try a lot of

different things to see what works and what doesn't. Some parents report big

progress from various diets and supplements, others have seen nothing. Some

have seen big progress from stem cell therapy, others have seen nothing. Ditto

for hyberbaric oxygen chambers, ABA, various therapy philosophies and regimens,

etc. etc. etc.

I will echo the post that warned you that you will have to steel yourself for

the fight. You will be fighting the school district, insurance companies,

government bureaucracies, etc. Even though it IS personal, you can't take it

personally, otherwise it will wear you down. Take care of yourself, make sure

to keep your health and spirits in good shape.

Best wishes,

>

> Hello,

>

> My name is and I am new to autism. My son was diagnosed on the 20th of

July. I still feel like I have no idea what to do. I also have a daughter who

is being evaluated as well on the 10th. So far I feel we have fell through

every crack there is to fall through. We have privately funded insurance which

did not opt-in for the Texas mandate. The therapy I was told he needed is way

more than I can afford. My son is 5. We had concerns when he was 3 but the

original doctor said he was too social because he said hi to him. So we missed

2 precious years. The doctor he saw this time said he didn't think the school

system could give him what he needs. We are in the Eagle Mountain Saginaw ISD.

He would be kindergarten. They are talking inclusion with an aide. He can

barely count to 5. I don't know what to do.

>

August 4, 2012

Hi ,

Are you sure your insurance is not required by law to fund autism therapies?

I've done my fair share of fighting insurance companies so I know that they

don't always tell you the truth when you ask. There is a Yahoo group dedicated

to the insurance issue. It's called Autism Insurance Information and I highly

recommend you ask questions there about whether you could get insurance coverage

or not. We've had to deal with both sides of the coin: first we had a

self-funded plan that wouldn't cover anything (this type of plan means the

company pays into a risk pool and these types of plans are governed by

E.R.I.S.A. and follow federal govt guidelines). Now we are covered under the

Teacher Retirement System's insurance (my husband is a public school teacher).

In Texas, if a plan is considered fully-funded, they have to follow the mandate.

A fully-funded plan means your employer purchases insurance coverage from a

licensed insurance company and the insurance company assumes all of the risk.

I'm not aware of any other exclusions to the law, but if your plan has one, the

people on the Autism Insurance Information group might be able to give you help

with fighting it.

HTH's and good luck!

Bonnie J.