Please Critique my Fact Sheet So, your kid has Autism, its time for me to update it again.

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06-17-03

So, your kid has Autism?

This is a fact sheet for parents or friends who just found out they have

a

child or know of a child or adult with Autism or Autism-like issues. I

have a 16 year old daughter with Autism. These are a few items I have

learned from my journey, other parents, professionals and the Internet:

1. For discussions on Autism get on the Saint s Autism news list.

Send

an email with text of " Subscribe autism " to

listserv@...

2. Sign up for free evaluation and services, age 0-21, from your local

school district and state special education department and early

childhood

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

http://www.health.state.ny.us/nysdoh/child/index.htm

3. Consider getting extra evaluation and services from Easter Seals

Easter Seals: Services for children and adults with disabilities and

special needs <http://www.easter-seals.org/site/PageServer>

they charge on a sliding scale based on income.

The state has to provide appropriate but not " all " or " best " services.

4. Learn the law and your child's rights http://www.edlaw.net

<http://www.edlaw.net/> www.reedmartin.com <http://www.reedmartin.com/>

5. Read everything you can and find out what works and does not work

from

others who have done it: http://www.autism-society.org

<http://www.autism-society.org/> http://www.feat.org

<http://www.feat.org/>

Autism Research Institute <http://autism.com/ari/>

http://osiris.sunderland.ac.uk/autism

http://www.futurehorizons-autism.com

<http://www.futurehorizons-autism.com/>

http://www.autism.org/links.html

http://www.aspergersdigest.com <http://www.aspergersdigest.com/>

http://www.tonyattwood.com <http://www.tonyattwood.com/>

6. Do only one new treatment, supplement or drug, at a time and keep

records on what is causing changes. Then, be sure to give each approach

plenty of time, several weeks, to work before passing judgment. It's OK

to

try things when you are sure they do no harm to your child and family

physically, financially or emotionally. It's also OK to change your mind

about programs, treatments or theories. It looks like most things only

help a percentage of the individuals with Autism. A logical sequencing

of

biomedical interventions for the treatment of autism and related

disorders: http://osiris.sunderland.ac.uk/autism/durham2.htm

http://www.gnd.org/autism/overview.htm http://www.gti.net/truegrit/

7. Join a local Autism group in your area, talk to and meet local

parents

and professionals. http://www.autism.org/links.html , Find or start a

local Autism email discussion list http://groups.yahoo.com

<http://groups.yahoo.com/>

http://groups.yahoo.com/group/autism-awareness-action ,

http://groups.yahoo.com/group/enzymesandautism

8. Watch out for magic cure-alls and snake oil salesmen, Autism Research

Institute <http://autism.com/ari/>

9. Take the best from all the various Autism groups and form the best

program for your kid. There is a lot of passionate debate and criticism

between camps of treatments and organizations.

10. Watch out for the " Warrior Parent " syndrome where you go against the

school district and professionals as a parent to war. Work on win-win

collaborative, team building with all people who interface with your

kid,

they will be the best allies, http://www.icsi.net/~stlevine/fault.html

Volunteer with the PTA, help out at school, church, where ever you can.

Once they get to know you the return in favors and help for you child

will

be more than you put in.

11. Do not spend all your time and effort on the kid with Autism at the

expense of your marriage, family and friends. The best treatment for

your

kid is a happy, healthy, and loving family to support them.

12. There is not a doctor you can go to who will manage " all " your kid's

issues. You, will have to become your kids expert and case manager. Many

of the treatments are non-standard and based on trial and error not

double

blind published peer reviewed scientific studies. Some doctors scoff at

some of the diets and treatments that work because it's often contrary

to

conventional medical wisdom. Sometimes you, the non-doctor parent, will

have to educate the experienced degreed professional. Strongly consider

taking the time to locate and work with physicians who are experienced

with your child's specific neurological disorder and who also network

with

other doctors in this field. http://www.autism.com/ari/

13. There is active research on a suggested link between the MMR vaccine

and Autism: http://osiris.sunderland.ac.uk/autism/vaccine.htm ,

National Vaccine Information Center <http://www.909shot.com/Default.htm>

, http://vaccineinfo.net <http://vaccineinfo.net/>

If you suspect your child's regressive autism is related to an adverse

reaction to a vaccine, beware of the 3 yr statute of limitations under

the

National Vaccine Compensation Program (NVICP). To learn about your

rights,

contact HITT * PATTERSON * SELL

<http://www.hittpattersonsell.com/pages/515314/index.htm> Jeff Sell 3rd

VP of ASA.

14. There are 4 main categories of treatments for Autism:

BIOLOGICAL: with digestive enzymes, vitamins, diet, nutritional and

herbal supplements, Houston Nutraceuticals Inc

<http://216.114.78.114/webcenter/sites/HNI/Home.asp?SID=3428 & N=Home> ,

http://www.kirkmanlabs.com <http://www.kirkmanlabs.com/> ,

http://www.aal.xohost.com/urinary.htm

Vitamin A Autism Research Institute <http://www.autism.com/ari/> , Look

at gluten and

casein free diets http://www.gfcfdiet.com <http://www.gfcfdiet.com/>

,acidophilus, super vitamins,

herbal immune boosters, DMG, Epsom salt baths, melatonin, Monolaurin,

probiotics like Culturelle and Primal Defense, Essential Fatty Acids,

http://www.puritanspride.com <http://www.puritanspride.com/>

http://www.vitaminshoppe.com <http://www.vitaminshoppe.com/>

THERAPIES: such as auditory training

http://www.up-to-date.com/saitwebsite/table.html

sensory integration http://home.earthlink.net/~sensoryint

http://www.sensoryintegration.com <http://www.sensoryintegration.com/>

, speech therapy http://www.asha.org/ ,

occupational therapy http://www.aota.org/,

regular daily physical exercise http://www.palaestra.com/autism.html ,

Music therapy http://www.musictherapy.org <http://www.musictherapy.org/>

EDUCATIONAL PRORAMS: ABA http://www.feat.org <http://www.feat.org/> ,

TEACCH Treatment and Education of Autistic and related Communication

handicapped CHildren - UNC-CH <http://www.teacch.com/teacch.htm> ,

social stories http://www.udel.edu/bkirby/asperger/socialcarolgray.html

,

sign language, picture systems, augmentative communication devices.

Treatment programs http://www.nacd.org <http://www.nacd.org/> ,

http://www.son-rise.org <http://www.son-rise.org/>

DRUGS:

Prozac,Zoloft,Tenex,Buspirone,Depakote,Resperdal,Secretin,Cloradine,

anti-fungals ( Nizoral, Diflucan) and the anti-virals (Valtrex, Famvir).

http://curry.edschool.virginia.edu/go/cise/ose/information/secretin.html

http://www.netrover.com/~southgve/druguse1.htm

http://www.rxlist.com <http://www.rxlist.com/> http://www.medscape.com

<http://www.medscape.com/> http://www.ncbi.nlm.nih.gov/pubmed

Our kids respond to far less amounts of these drugs than are used on the

" normal population " . Autism is a neurological disorder affecting the

senses and is not a mental illness. We have met 40 year old adults who

spent years on mental ward treatments and heavy drugs only to find out

they were not crazy just a little weird because of Autism. Most people

do

well with non drug approaches to reduce the over stimulation they

receive

from their senses being on full blast all the time.

And finally, understand, your kid will improve and grow over time. You

will go through the grieving process for the loss of the child you had

dreamed of raising. Raising a child with Autism can be a very different

path than you had planned. It is OK to feel grief, guilt, depression,

joy,

anger, frustration and job burn out. You cannot avoid it, understand and

work through it. We are all here to help, laugh, cry and rejoice with

you.

Its not an easy job, some think God picked us because we had the special

talents these kids need. For me, Lora, my daughter, is the best thing

that

ever happened. She has made me more caring, considerate and passionate

about life. I still remember the day I came home from work when Lora was

about 6 and she looked up and said " hello daddy " , her first sentence.

Regards,

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C.P.M., pwatson@... Senior Buyer UTD

Past President of ASCC Autism Society of Collin County Texas

http://www.autism-ascc.org <http://www.autism-ascc.org/>

Home page http://www.geocities.com/pwatsonascc

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