New Diagnosis of Austism - What Now?

Updated on May 04, 2008
E.O. asks from Houston, TX
34 answers

My son was just diagnosed with Austism by a local pediatric psychiatrist. He is age five. Before now, he has had the diagnosis of either mental retardation, developmental delay, epilepsy (because of seizures...) He showed signs of delay since he was an infant. He was in ECI until 3 yrs., now goes to a PPCD program, spec. ed class at school, and has speech therapy, physical therapy and occupational therapy (barely any hours with the public schools- they don't supply much therapy). So now is the new diagnosis of Autism - finally. We can't afford outside therapy on our income. What is my next step as far as special programs to help him, financial support? I know nothing about all of that! I need to know what to do next. I mean, what is the next step after diagnosis and spec ed at school? Thanks for any and all resposes!

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R.D.

answers from College Station on

I HIGHLY recommend this book: Healing the New Childhood Epidemics by Kenneth Bock, M.D.

READ IT!!!

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R.W.

answers from Houston on

I talked with a woman at Kroger who had a preschool age (4 or 5) boy with autism with her. He appeared perfectly normal. She was buying wheat free products, which was how we go to talking. She said he has autism, they had been advised to institutionalize him because he was so bad. She got some advice to change his diet and eliminate wheat and dairy, and over six months he completely changed, started talking and interacting, calmed down, etc. It seemed quite amazing. I don't know who gave her the advice to change his diet, but there is probably some stuff on the internet...

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S.T.

answers from Houston on

Hi! I have four girls and at least three of them are on the autism spectrum.

What I have done for them:

1) I read The Out of Sync Child and The Out of Sync Child Has Fun. You can get them at the library or order on Amazon. They helped me understand sensory problems and how to help. We do daily sensory therapy and it's helped my girls

2) I have read lots and lots of information on autism and so I can recognize what my children do that are typical autism traits and help them in those specific areas.

3) I started going to ASPIE meetings www.aspieinfo.com Also, the people at www.asdfocus.com in Stafford/ 59 are very helpful.

4) I finally put them on a gluten free diet. Gluten is found in wheat (avoid all things with modified food starch as that is usually wheat) and oats and some other grains. My 5 year old can control herself much better, my 4 year old is more aware of things happening around her, and my 3 year old is speaking more clearly, frequently. There are some clear differences in them since going GF. We have not yet eliminated caesin/dairy but I have heard good things about that as well.

Please feel free to PM me.
S., mom to four girls, KF Asperger Syndrome, BH classic autism regression, TG classic autism regression, KJ AS personality

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C.P.

answers from Austin on

My son Zach was diagnosed with PDD (on the autism spectrum) 6 months ago. It is so overwhelming--you are not alone and there is lots of support out there. I started with the things I could control and went glueten and cassein (dairy) free. It was hard but we're in the groove now and I *definitely* see a big change in Zach--less aggressive. I'd also recommend a good multivitamin and fish oil (make sure it's really pure, though, like Nordic brand).

This is a great web site for all things autism-related:
http://talkaboutcuringautism.org/index.htm

What is very hard is the cost of all of this. Not much is covered by insurance (and none by my insurance). If you could get into Thoughtful House I would try. It's one of the leading Autism treatment centers in the country and we're lucky to have it right here in Austin. They do have a scholarship program. Read about it here:
http://thoughtfulhouse.org/index.html

It is so overwhelming, and I still have very sad, bad days, but I want you to know that there is hope--that it takes persistence, sometime downright bitchiness, but there's hope.

If you ever want to contact me to ask questions, please feel free. I also have a bunch of books I've read on everything from ABA at home to diet stuff and more if you'd like to borrow them.

Take Care!!

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B.P.

answers from Houston on

I have a friend that has a daughter just diagnaosed with Autism. She applied for and recieved SSI. That is social security disability. Do that, even if they say No, do it again. She may even qualify for medicaid.

Call Texas Childrens Hospital. Be prepared to spend all day on the phone getting the right department or someone that cares. Just do it and you'll get a wealth of info once you get to the correct dept.

Call the March of Dimes. That is my premier place to start with children with diabilities of all sorts. We take care of foster children and have adopted a few with disabilities. They have been a wealth of info for places for me to go for help for various things for years.

Your dr. that gave the diagnosis should be your first line of information of where to go and what to do next. If he /she is not - fire them and find a dr. that is going to work with you. I work with Patti Peoples across from Johnson Space Center. She is awesome on all levels.

Here are a few more resources for you. A psychiatrist friend of mine, from out of state that deals with this type of thing suggersted these. I hope some of this helps. IF you have never had to advocate for one of your children, you now thrown into a world that you've never been in. You will have to get mean and not take NO for an answer. I got good at advocating when my now 28 yr old recieved a pace maker at 15. He went in for a football physical and came out with a pace maker and then the 3 after him had various issues that reuqired advocating for also. Good luck. If you need help or someone tot alk to - lmk. Here are the resources to check out.

Living with autism spectrum disorders; guidance for parents, carers, and siblings
Authors: Elizabeth Attfield, & Hugh Morgan
Publisher- Paul Chapman 2007

Positive behavior strategies to support children and young people with autism
Author: Martin Hanbury
Publisher- Paul Chapman 2007

The encyclopedia of autism spectrum disorders
Authors: Carol Turkington, Ruth Anan
Publisher- Facts on File 2007

Growing up with autism: working with school age children & adolescents
Editors: Robin Gabriels and Dina Hill
Publisher- Guilford Press 2007

Behavioral interventions for young children with autism: a manual for parents and professionals
Editor: Catherine Maurice
Publisher- pro-ed 1996

Exploring the spectrum of autism and pervasive developmental disorders: intervention strategies
Author: Carolyn Murray-Slutsky, MS, OTR, and Betty A Paris, PT

Autistic Spectrum Disorders: understanding the diagnosis & getting help
Author: Mitzi Waltz
Publisher- O’Reilly 2002

Siblings of children with autism: a guide for families
Authors: Sandra L Harris, PhD and Beth A Glasberg, PhD
Publisher: Woodbine House 2003

If you live near a children's hospital, they may have these resources in the family resource room. Otherwise, you should be able to get them through an interlibrary loan system.

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J.M.

answers from Austin on

Bless you for the mountain of challenges in your path. My heart is with you and your family.

I know little that can help you but if you haven't been to this site. Visit it.

http://www.autism-society.org/site/Clubs?club_id=1040&amp...

I think you will find help there.

Good luck

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K.K.

answers from Killeen on

You can afford to get help for your daughter. she qualifies for social security. Go to this link..

http://www.ssa.gov/pubs/10026.html#Introduction

it should give you the information you need to get started!!!

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M.C.

answers from Houston on

I am a single mother of three young boys. I am also going to school to be an occupational therapy assistant. I have one year left. You might want to ask your child's OT and PT for additional resources and support.
there is a website where you can go to start out looking for support. http://www.autism-society.org/site/PageServer
and this one...
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=...
I totally understand about the limited amount of therapy your child receives from school's special ed. I've been there with my older two boys. I also understand the limited income and insurance problems. I hope you find what you need.
If I find additional help I will send it your way. I have a classmate that worked with children with autism. She may have some great resources that I am not aware of. I will let you know.
M.

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S.M.

answers from Austin on

Contact Autism Speaks to get the 100 Day Kit. It is a kit designed for newly diagnosed autism families that has personalized information about diagnosis, treatment options, and tips for family and friends. www.autismspeaks.org/community/fsdb
email: [email protected]____.com
phone: 888-AUTISM ###-###-####)

Also, if you have limited income, contact social security to check into Social Security Supplemental Income. You could recieve SSI for your son based on how much money you make.

The ARC of the Capital Area is a service/support for Austin. Start with the Austin website and see if there is one in the Houston area.
www.arcofthecapitalarea.org

Seek out other families in your area. Try the Parent Liaison through your district. She should know of family support networks in your area.

The Walk for Autism is in November at the Dell Diamond in Round Rock, TX. It is a good way to meet other families in the area. There may be a walk in your area. Start with the website and see. www.walknowforautism.org

HALO-Soma Rapid Prompting Method is not free, but it is less expensive than some of the other therapies. (She is located in Austin.) Plus it is something that you can be trained to do yourself. There are examples on the website. http://www.halo-soma.org

With an actual autism diagnosis, you may be able to receive more services from the school system. Keep pushing for more. You have to point out the "educational need" for the therapy. Can he catch a ball? He will need to in order to participate in gym. If he cannot, then the school should provide physical therapy. Can he cut with scissors? He will need to be able to do that in kindergarten. If he cannot, then he will need occupational therapy. You have to have specific skills that they need in the educational setting. If you can point them out, then they have to provide it. Educate yourself on the special education system as much as you can. Learn the laws that will affect your child.

The Texas Department of State Health Services has a lending Library that you can access for free. It has resources on autism and other disabilities. They will mail the books to you for free. You just have to pay postage back. http://www.dshs.state.tx.us/library.shtm

Your local MHMR should have esources available to you. Start with your ECI contact and ask them about what they know. There are lists to get on now to help in the future (like 10 year waiting lists).

The Out of Sync Child Has Fun book that someone else mentioned has OT and PT type activities that you can do with your child at home. The book is available through Amazon.com
http://www.amazon.com/Out-Sync-Child-Has-Revised/dp/03995...
It is a way to provide the sensory integration inpute that your child probably needs without having to pay for therapy.

Do you use a form of Picture Exchange Communication System? It is the use of pictures on small pieces of paper that your son can hand to you to make requests. It is a way to find out what he needs. It could ease some of his frustration. You can make your own by drawing the picture or taking photgraphs. Also Do 2 Learn is a great source. They have cards on their website that you can download and print for free. http://www.do2learn.com/

As far as a gluten/caseine free diet, there are tests that can be run to see if your child even has a sensitivity to them. Enterolab can do a stool sample test for gluten. There is also a genetic test that can be done. It might be worth looking into before you switch over. It can take up to 8 months to get all of the gluten out of your system. In 8 months, was it the gluten or was it something else you tried that made the difference?

Hope this is helpful. Definately get the 100 day book from Autism Speaks. It has been created by parents that wanted to share with other parents the things that they wish they had known in the first 100 days.

My son was diagnosed at 2.5 years old. He will be 5 in August.

S.

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S.C.

answers from Houston on

Hi E.,

I have a little girl that just turned 8 and wasn't diagnosed until she was your son's age. We always felt that she was a bit delayed, but didnt' really think about it being something as serious as autism. The good news in that is that they (your son and my daughter) must be on the mild side or it wouldn't have taken them so long to finally figure that out.

From our own experience this is what we did:

I googled PDD-NOS (that's what we were told) and cure. Time and time again I got info on a dietary change for these little ones. I was overwhelmed as it was but I was thinking a diet change?! How would THAT make any difference? I discussed it with my husband and he said he couldn't see how it would hurt, so let's do it.

For US (I know others have had different experiences) it has made the change whether she talks or NOT. If she goes off the GFCF diet, what little she does say is echo'd back to us.

Get a book by Karyn Serriousy (sp?) is called Unraveling the Mysteries of PDD-NOS (spelled out). This might be found through a lending library of a austism support group. I attend a Brazoria county one in Angelton once a month.
Another great book is by Dr. Lisa Lewis on this dietary change.

We also found out recently that her vision tracking is that of a 4 year old and that's part of why she's not reading at 8yrs old. We've just started vision therapy and she's got glasses now too (for an astigmatism).

It's EASY to get overwhelmed with this. I guess you'll need to treat this like a marathon rather than a sprint. Make sure to take care of yourself, even if it's just a bubblebath at the end of the day.

Sagemont church is having a symposium this summer, and I'll check on the date for you and get back. I've seen the speaker list and it's going to be a pretty good meeting. I'm sure they would have scholarships if you needed one to attend. I think the charge is only around $40.

I'm there with ya, these little guys are definately in there, we just have to help them by finding out what works best.

Please feel free to e-mail me.

S.

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H.O.

answers from San Antonio on

I have 2 sons on the Autism spectrum who attend public school. Where exactly do you live... if in the San Antonio area, there's a great organization called The Center for Health Care Services that can give you funds for certain things if you qualify. Also a great source of info... here's their site:

http://www.chcsbc.org/index.html

Also, Any Baby Can has tons of info on services, centers, support, etc. around San Antonio.

http://www.anybabycansa.org/

The ARC of S.A. is another great place to go for info & support:

http://www.arc-sa.org/

The rest is a list of other organizations in S.A. that can help you:

http://www.autismsocietysa.org/index.html

http://www.respitecaresa.org/index.asp

http://www.tea.state.tx.us/special.ed/

http://www.aacog.com/mra/default.asp

Hope this helps. I know it's a lot of info, but with a little time, you can find tons of help for your child. Good luck :-)

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A.B.

answers from Austin on

VERY important, start with calling the Human Resource Director(local) for your husbands insurance, THEY CAN HELP with insurance coverage. I have seen it time and time again, someone has to go to the source to get help and get more than one intenty involved. Notice I said involved, not ugly. Your husband's HR does have control of your medical coverage. There have been laws now passed in the State of Texas in reguard to denying medical claims and AUTISM...you have rights, you have to ask for them!!!! You can also go to your local Education Service Center, what region are you in? Ask, and call them and inquire about Non-Educational Funds to help with therapy, parent training, and camps. There are also many, many, many grants available on line to help with what insurance will not pay for: Buebel-Aiken Foundation, Autism Speaks, United Healthcare, etc. If you could post this plea for help then you can apply for a grant!! I have recieved over $5,000 in one year to help with my son's needs...if I can, anyone can! Word to the wise, get ABA (Applied Behavior Anaylisis) training NOW!!!! Google it and find out more about it on the web...It will change your lives!! ABA addresses problem behaviors and replaces them with LANGUAGE and/or more approprate/functional communication!!! If you would like a provider of training in your area, I will gladly give you her number, just ask. She lives in New Braunfels and has taught children with Autism for years and cares about teaching the parents how to be successfull with their kiddos, too! God Bless! -A.

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H.B.

answers from San Antonio on

E.,
You need to contact DADS: Department of Aging and Disability Services (if you haven't already.) They can give you all the information on how to apply for HCS: Home-Community Based Services. There is a long waiting list but while you are on the waiting list they may be able to refer you to other services that can help supplement your insurance and income. The direct line for the intake supervisor, JC, @ the San Antonio office is ###-###-####. Also, you definately need to contact SSI and get an application for him. You can also contact the local MHMR: Mental Health Mental Retardation office. I don't have the # on hand but the website for the Ausin location is www.atcmhmr.com. I do not have a child with disabilities but I am an advocate for children and adults with MR and developmental disabilities. I hope this helps. Feel free to contact me if you need someone to talk to.

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M.O.

answers from Houston on

Hi there. First of all let me say you are definately not alone in this. Secondly your first step should be to apply him to SSI through social security he will also get full medicaid through them to cover insurance issues. Now that being said you need to see a neurologist if you have not already done so to run chromosonal tests. The reason I say this is we have one autistic child and our second seemed to be developing it also but we discovered he has a chromosonal disorder . It really can make a difference as far as treatment. If you need to talk or anything feel free to email me.

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D.B.

answers from San Antonio on

You should check to see if your son qualifies for ssi disability. If so, that would allow him to receive monthly "income", assistance with other program and medical insurance.
You can go to this weblink for more information. Most people think children can't qualify but that is a myth.,

http://ssa-custhelp.ssa.gov/cgi-bin/ssa.cfg/php/enduser/s...

Blessings,
D.

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P.M.

answers from Houston on

you need to get your pediatrician to recommend a good social worker OR better yet, your school system should have a social worker or school counsellor that you are entitled to!
Elaine Hime has also written a guide for resources in this area - she works in the medical center area and has helped many families understand their financial resources as well

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K.D.

answers from Houston on

I cannot answer your question specifically, but I do have a story that might be of some help. I'm sure you have heard the controvercy surrounding the connection between diet and autism. Well, I told a coworker of mine everything that I had heard or read regarding Jenny McCarthy and her fight to help her son with autism. In short, McCarthy did her research and changed his diet according to the plans she found relating to autism. Within months, her son's "condition" had completely reversed. Anyway, my coworker took that bit of info and researched Jenny McCarthy/autism on the internet, and started making the same changes at home on her 5 year old niece. Low and behold, the child is now showing SIGNIFICANT signs of improvement. She was so excited about it, she told me all about it with tears in her eyes. So, my first step would be to do the research and change the diet. It fits your budget, and may surprise you while you continue to research educational programs. My heart and prayers go out to you and your family. Best of luck to you!

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J.M.

answers from San Antonio on

E. i am a teacher and I know several low income families receive help and medical/counseling services through the local MHMR. I hope you can find the help that you need. I will add you to my list of survivors in the Relay for Life I am walking in this Friday in New Braunfels.

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T.G.

answers from Houston on

My 1yo daughter has infantile spasms (seizure disorder) and is developmentally delayed. I would make sure the psychiatrist you went to is familiar with children that have seizure disorders because a lot of their symptoms closely resemble autism. However, your child should not be treated as any other healthy child with autism. First and foremost, your child has a seizure disorder that has caused these autistic characteristics, so this is really a medical issue which should be covered by your insurance! I would get another opinion. I don't think this diagnosis of autism should overshadow previous diagnoses. I really feel for you and more than most, I know what you are going through! Take care and feel free to contact me!

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S.A.

answers from Killeen on

E.,
wow...sounds like your plate is quite full. Look for your local MHMR (Mental Health Mental Retardation) office. You may also qualify for SSI (financial help). This is based on income. I would also suggest you look for a local support group. My son was diagnosed with Asperger's (took many years to get that diagnosis) which is on the autism spectrum and I have two nephews that are autistic. Educate yourself, the internet is a great place to start, and find some support. Good luck to you!

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K.H.

answers from Killeen on

I could be wrong but I believe your son now would qualify for Social Security. It is worth checking into. Also check into State laws. He now would also qualify for IEP (independent Education Program) Meaning that state and federally funded school must create a learning program tailored to your sons needs. Good Luck and God Bless

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K.M.

answers from Beaumont on

Please contact a friend of mine who is the President or the Autism Society of Southeast Texas. She will be able to answer your questions! Her name is Denise and her email address is [email protected]____.com in the subject line put "referred by K. Moreno". Best of luck tou you and may God bless you and your family.

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L.W.

answers from Dallas on

Get the book by Jenny MCCarthy A Mother's Journey. Great book with lots of information. Her son was healthy until he started getting immunizations. Read it... I do not have a child that is autistic but found it to be very informative.

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B.K.

answers from Austin on

I just sent a post about the National Women to Women Initiative that will be held May 3rd, at the Crown Plaza Hotel. Read it for more details. There is a cost but if that is a problem for you, please call me at ###-###-####. A scholarship may be available to you.

Dr. Laurence Becker will be present to answer questions regarding autism. Dr. Becker is an educator and networker who works through many avenues to help parents. You can read more about him if you go to Google and type in his name. He is an Austin treasure.

By the way, men are welcome to attend also.

B. King, Mentor to Moms

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A.R.

answers from Austin on

My son just turned 5 - he was diagnosed with Autism when he was 4 years old. We have him in the same programs at school that you mentioned but he is also getting excellent help from a place called Kidstherapy. They take most insurances and medicaid. It has done wonders for him since he started going there and has improved his language, motor, and social skills tremendously.
This is my email address [email protected]____.com in case you want further information, please feel free to contact me.
Good luck and I hope you find this helpful and get your son the help he needs.

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M.N.

answers from Longview on

Hi, E.!
My prayers are with you and your family. I moved here last July so don't know any local support groups. If you can find a local Autism support group you will find a lot of answers to your questions. Where I moved from was a very strong support group and they were able to get grants and stipends for parents to attend autism conferences. They gave me a stipend and I went and learned so much. There are also tons of books. Check with your library. Our old group had a huge library with books and videos. Maybe one close to you will also. I hope this helps!You can write me back if you want and I will get you the info. for the group I was in and maybe they can help you find something or even more info.

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S.S.

answers from Houston on

Go right now to the Texas Department of Aging and Disability Services and the Mental Health and Mental Retardation Administration in your county. There is new funding for children with autism, so services are available that may get overrun soon (a social worker friend has told me). And talk with other parents, either online or in support groups. There is so much more information available and more help than ever before, but you'll have to fight to get it. Blessings and best wishes.

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B.S.

answers from San Antonio on

E.,
You would have to check with your public school system to see how they can help you. They would know what they can offer your son and other places to recieve help. I know how you feel financially. I was a teacher but after having my son I wanted to stay home with him. I work from home with an awesome group of moms and I would love to share with you how you could earn some an extra income from home. And You are right, Jesus is the only one who can help us through life. He wouldn't give you something you can't handle.

B.
www.MoreForMyBaby.com

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S.G.

answers from Houston on

You are a survivor! YAY YAY YAY!!
http://www.visionlearningcenter.com/vision_therapy.html

I really cannot say enough good about this! AND, your insurance might cover part of the cost...check before hand.

You already know you are a strong mom! You will get through this new challenge too!
You will always be your sons best advocate. Never give up fighting for what is best for him in school or life. Join an autism support/info. group in your area.

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M.C.

answers from Longview on

Dear Eve, Your story hits home. my great grandson was recently diagnosed Autistic. With 1 in 150 children born into Autism, the insurance companies should add this coverage into their plans. Most young couples can not afford the therapy that is needed for this disease. More research needs to go into the study and treatment of Autism.
I guess we could all write our congressmen and women to authorize more help on the national level.

Frances

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R.C.

answers from Houston on

Hi I am a mother of 3 Autistic boys. I just received this link from Shelly Townsend at University of Houston Parent Education Project. Her phone number is ###-###-####. She can help you find resources as well as this link.

http://www.texasautismadvocacy.org/AutismResourceGuide.htm

I hope this helps!

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S.K.

answers from Houston on

Go to your school. Insist on an IEP (Individual Education Plan). StatE mandates such. Texas is at the bottom of the states in educational offerings in special ed. (Or so I have heard). Meet with counselor/principal....get a real program. Ck regularly to see how your child is doing. Get teacher's email address and get feedback. Regular teacher meetings....

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R.B.

answers from San Antonio on

You need to contact the Brighton School on Higgins Road, on the NE side of town. I don't have the phone number handy but they are listed in the phone book. This a wonder organization/school for children with these types of needs. R. B

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C.A.

answers from San Antonio on

Hi,
I am studying to be a Naturopath, and have a B.S. in Holistic Nutrition. I was able to help myself and family...by adopting a healthier lifestyle. For the past few years I was concentrating on cancer prevention, and now, for some reason looking into autism. I believe that nutrition can be your best weapon against dis-ease. In my studies I have found some great information and I am willing to share what I know. If you would like you can email me at [email protected]____.com or mybiopro.com/claudia13 or call ###-###-####.

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