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Re: here is my faq sheet

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Good Job! Sincerely , Donna

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here is my faq sheet

>4-7-2000

>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 13 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 0-24, 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

>http://www.easter-seals.org 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

>

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

>others who have done it. See the links at http://www.autism-info.com

>http://www.autism.org/links.html http://www.isn.net/~jypsy/autilink.htm

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

>

>6. Do only one new treatment, drug, or supplement 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 judgement. Its OK to

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

>emotionally, financially, or physically. Its also OK to change your mind

>about programs, treatments or theories.

>

>7. It looks like most things only help a percentage of the individuals

>with Autism. What works for my kid might not work for you.

>

>8. Join a local Autism group in your area, talk to and meet local

>parents and professionals. http://www.autism-info.com

>

>9. Watch out for magic cure-alls and snake oil salesmen, for advice

>see http://www.autism.com/ari

>

>10. 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.

>

>11. 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

>

>12. 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.

>

>13. 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.

>

>14. There is not a doctor you can go to who will manage " all " your kids

>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 its 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.

>

>15. There is active research on a suggested link between the MMR vaccine

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

>http://www.909shot.com/autismto.htm http://home.swbell.net/prove

>

>16. There are 4 main categories of treatments for Autism:

>Biological - with diet, vitamin, herbal and nutritional supplements See

>http://www.antibodyassay.com , A new study of Vitamin A

>http://home.att.net/~pediatricaac/main.html Look at gluten and casein free

>diets http://www.gfcfdiet.com ,acidophilus, super vitamins, herbal immune

>boosters, DMG, Epsom salt baths, melatonin, Monolaurin, probiotics like

>Culturelle and Primal Defense and Essential Fatty Acids.

>http://www.nutrition-warehouse.com http://www.puritanspride.com

>or a local health food store.

>

>Therapies - such as auditory training http://www.teleport.com/~sait/

>sensory integration http://home.earthlink.net/~sensoryint speech therapy

>http://www.mrtc.org/~duffy/yaack, occupational therapy and regular daily

>physical exercise.

>

>Educational programs - such as TEACCH http://www.unc.edu/depts/teacch

>ABA http://www.feat.org ,

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

>, sign language, picture systems, augmentative communication devices.

>

>Drugs - look at secretin, prozac, buspar, pepcid, PPA (dexatrim), see

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

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

>http://www.ncbi.nlm.nih.gov/pubmed

>Max Wiznitzer MD O/A, Assoc. Prof. Pediatrics CWRU ph#

>

>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 death 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 can not 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.

>

>

>Date: Thu, 3 Feb 2000

>

>Here is my check list of Autism treatments:

>

>1. Get the urine test for gluten and or casein problems, try the gluten

>and milk free diet. It causes no harm, cost little and you can do it all.

>

>2. Give the acidophilus and natural multiple vitamins, again it does no

>harm and all kids and adults need these.

>

>3. Try the Cod liver oil vitamin A. Try the epson salt bath. If they have

>problems sleeping try melatonin. Again the are all safe and cause no harm

>unless you over dose, " all things in moderation " .

>

>4. Then start the ABA-TEACCH, Speech, Auditory and Sensory therapy, none

>of these hurt and can be combined into a multiple approach. Don't let

>anyone convence you into only doing their thing, thats silly, use them

>all.

>

>5. Use Carol Grays Social Stories to teach these kids how to understand

>the social world.

>

>6. Only after doing your best at all the above items look at prescription

>drugs like SSRI's prozac, luvox or other ones.

>

>I see too many of todays parents who jump right to drugs by going to a

>doctor who has little understanding of the current research.

>

>I also see too many parents doing only one therapy, like ABA or TEACCH, or

>drugs, with out looking at the Gut problems or other ideas that will help

>also. Many of the behaviors are symptoms of the gut and biological

>problems and sensory and auditory problems. Drugs, ABA and TEACCH all work

>on symptoms and might ignore the root causes of the problems. Its the same

>as parents who give ADHD kids ritalin first without checking if the kid

>might have a sugar high from a bad diet of starch and sugars with vitamin

>shortages. The point is if you fix the biological problems first, the ABA

>and TEACCH might work far better if they are able to hear, listen and

>understand better.

>

>Do not expect a quick fix miracle cure like only Secretin or only ABA or

>only drugs. Yes, there are kids who recover almost 100% with these.

>However, it appears that the majority of the population with Autism have

>multiple symptoms from multiple areas that take multiple approaches. I

>know for many new parents the desire for a quick fix can take on a

> " religious fever " for one idea. Just realize this journey might take a

>long term multifaceted approach.

>

>Regards,

>--------------------------------------------------------------------

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

>The University of Texas at Dallas

>President of ASCC Autism Society of Collin County

>ASCC Home Page http://www.autism-ascc.org

>These views are mine alone and not any organization

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