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 Johns
Autism news list. Send an email with text of "Subscribe autism" to
listserv@maelstrom.stjohns.edu
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, Speech and OT
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 the "best"
services.
4.
Learn the law and your child's rights http://www.edlaw.net
www.reedmartin.com http://www.advocacyinc.org/handoutEducation.htm
http://www.wrightslaw.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.feat.org http://autism.com/ari/ http://osiris.sunderland.ac.uk/autism
http://www.futurehorizons-autism.com
http://www.autism.org/links.html http://www.aspergersdigest.com http://www.tonyattwood.com
http://www.coping.org/copingbook/normaliz.htm
"Tools for Parents of Children with Special Needs”
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/group/autism-awareness-action
,
http://groups.yahoo.com/group/Texas-Autism-Advocacy/
http://groups.yahoo.com/group/enzymesandautism
8.
Watch out for magic cure-alls and snake oil salesmen, 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, volunteer with
MHMR as a parent educator, 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. Your Husband, Wife, other Kids and
YOU need love and support as well.
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/
see the: DAN! Physician Referral List a base of physicians who wish to employ
rational, scientifically sound approaches to the diagnosis and treatment of
autism.
13.
There is active research on a suggested link between vaccines (MMR and others) and
Autism: http://www.house.gov/burton/autism.htm
http://osiris.sunderland.ac.uk/autism/vaccine.htm
, http://www.909shot.com/Default.htm http://vaccineinfo.net
http://www.freewebz.com/schafer/URL/g.htm
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 the Law Offices of Jeffrey Z. Sell, P.C. http://www.JZSLAW.com Jeff Sell is the father
of 9 year-old autistic twins, the 1st V-P of ASA and ASA's Government Relations
Committee Chairman.
14.
There are 4 main categories of treatments for Autism:
BIOLOGICAL:
with digestive enzymes, vitamins, diet, nutritional and herbal supplements,
http://www.kirkmanlabs.com http://www.houstonni.com/
http://www.aal.xohost.com/urinary.htm
Vitamin
A http://www.autism.com/ari/, 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,
Essential Fatty Acids,
http://www.puritanspride.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
, 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
AVB-Applied
Verbal Behavior- http://www.behavioranalysts.com
FloorTime
http://www.mindspring.com/~dgn/playther.htm
Neurofeedback
http://www.adhd-biofeedback.com/
EDUCATIONAL
PRORAMS:
TEACCH
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.son-rise.org
DRUGS:
Prozac, Zoloft, Tenex, Buspirone, Depakote, Resperdal, Secretin, Cloradine, anti-virals
(Valtrex, Famvir) anti-fungals (Nizoral, Diflucan), Chelation, TTFD,
Methylcobalamin, B12 shots, steroids, anti-inflammatory drugs, IVIG.
http://curry.edschool.virginia.edu/go/cise/ose/information/secretin.html
http://www.netrover.com/~southgve/druguse1.htm
http://www.rxlist.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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Paul
Watson C.P.M., pwatson@utdallas.edu
Senior Buyer UTD
Past
President of ASCC Autism Society of
Home
page http://www.geocities.com/pwatsonascc
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