Emotionally, although it was expected it still feels like being hit in the chest with a ball bat. Not that this is a terminal issue or that there is no hope, just that we do have to figure how to best parent and support him from square one. I do not want to let him down or fail him and I know there are going to be mistakes, but I want as few as possible. I have this boding sense of fear right now because I have no understanding of what Jackson or the rest of the family is in for with this. I know it will pass as I gain more knowledge of this condition, but it is getting past this initial feeling that is hardest.
We are going to be a lot of research and I am going to be building a good library of books about Asperger's now.
I called www.autismspeaks.org because they provide free 100 day kits for people with newly diagnosed Autism cases. It provides information about it and helps to plan what to do next. That should be arriving in 7 - 10 days.
The next item in my personal agenda is to reach out and find some local groups to help us learn and to begin my library by ordering some books to read.
My wife has been researching gluten free diets where we can change our eating habits to better help him.
We are facing this as a family and if he has to have a diet or lifestyle change the rest of us are going to do it with him. He is only 4, but he is not going to have that stuff alone.
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Here is a copy of the handout from the doctor:
Autism Resource Guide - Websites
Recommendations - 1
Resources for families of patients who demonstrate some signs of Autism –
Prior to Diagnosis
View video of typical development and delayed development.
Resources for families of patients Newly Diagnosed
Local Resources:
The Autism Program – (TAP) is a Statewide program. Locally, it is located at 904 W. Nevada in Urbana. The phone number is 217 244-1395. TAP provides a resource room with books, tapes, and free visual supports, social skills groups, New Diagnosis parent program, technical assistance, information and referral plus much more.
Family Resiliency Center - This is the local website for the above program.
CU Autism Network - local (Champaign County area) parent and professional support and networking group.
Illinois Autism and Technical Assistance Project
The Illinois Autism Training and Technical Assistance Project (IATTAP) is an initiative of the Illinois State Board of Education (ISBE) and join other ISBE initiatives as part of the Illinois Statewide Technical Assistance Center (ISTAC) providing training and technical assistance to schools in Illinois. Has fact sheets and on-line training.
National Resources:
Autism Speaks – 100 day kit for Autism or Asperger syndrome - A personalized resource to assist families in getting through the critical time following an autism diagnosis
What is Autism, what are the indicators, treatment options.
General information, diagnostic considerations, discredited theories, well-settled therapies, unsettled or investigational treatments, doubtful or discredited methods, etc
General information about autism and life.
Autism Resource Guide - Websites
Recommendations - 2
Additional Autism resources
Illinois resources
Under “Resources” there are downloadable pamphlets and brochures on topics such as toilet training, preventing tantrums, and improving eating habits.
Look under IRCA articles for helpful information on a variety of topics.
Diagnosis, treatment, your child’s rights, family life
American Academy of Pediatrics. Health related topics, research
Autism Fact Sheet under “Publications” and list of resource by state.
Autism Resources and information as well as information on vaccines
Medical aspects of autism, educational approaches, communication approaches, and family reference guide
General autism information.
For the most interesting area, under “Resources” click the On-line tools button.
Shows video clips of creating teaching opportunities
Wrights Law - Information about special education laws, rights, and advocacy.
Disability-related information and resources
Resource information
Autism Resource Guide - Websites
Recommendations - 3
Autism Video Trainings On-Line
www.autisminternetmodules.org – The Autism Internet Modules - OCALI
The Autism Internet Modules were developed with one aim in mind: to make comprehensive, up-to-date, and usable information on autism accessible and applicable to educators, other professionals, and families who support individuals with autism spectrum disorders (ASD). Written by experts from across the U.S., all online modules are free, and are designed to promote understanding of, respect for, and equality of persons with ASD.
http://www.kitonline.org/ntci/home.html - The National Training Center on Inclusion
The National Training Center on Inclusion (NTCI) was established to support the overall mission of Kids Included Together (KIT) through training, technical assistance and resources of the highest quality for staff at all levels of experience.
It is our goal to provide an empowering learning environment that helps providers build practical skills that can be immediately implemented in programs. KIT's National Training Center on Inclusion utilizes a combination of the latest technology coupled with live presentations by dynamic and experienced trainers and practitioners to support providers in welcoming children of all abilities.
Illinois Autism Training and Technical Assistance Project
This video is a basic introduction to Autism Spectrum Disorders (ASD) appropriate for family members, school personnel including teacher assistants and general education staff as well as community members who want to learn about this increasingly prevalent disorder and basic effective strategies for interacting with individuals with ASD.
Autism Resource Guide - Books
1. “10 Things That Every Child with Autism Wishes You Knew” by Ellen Notbohm
2. “Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges” by Lori Ernsperger Ph.D, Danielle Wendel, and Liane Holliday Willey
3. “Autism Spectrum Disorders from A to Z” by Barbara T Doyle and Emily Doyle Iland.
4. “Everyday Solutions: A Practical Guide for Families of Children with ASD” by Mindy Small & Lisa Kotente.
Note: these books can be checked out from The Autism Program Resource Room, TAP, 904 W. Nevada, Urbana, IL
Autism Resource Guide – Websites
Recommendations – 4
Asperger Syndrome Resource Guide
Online Asperger Syndrome Information and Support Website (O.A.S.I.S.)
This web site provides articles, educational resources, links to local, national and international support groups, sources of professional help, lists of camps and schools, conference information, recommended reading, and moderated support message boards
Wrong planet is a web community designed for individual with Asperger Syndrome. This site provides a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chat room for real-time communication with other Aspies.
Tony Atwood – This website is a guide for parents, professionals, people with Asperger Syndrome, and their partners. (make sure you type the “au” at the end)
The Gray Center – Carol Gray – Information on social stories.
Independent living on the Autistic Spectrum. This is an online support group for people with Autism or related conditions, including but not limited to Asperger Syndrome. We come together here to make friends, support each other, and share practical experiences and tips relevant to independent living with our condition. Our members live all over the world. The communication medium is e-mail.
Social Networking for Adults in the UK & Ireland with Diagnosed or Suspected Asperger Syndrome.
TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.
The Autism Society of America. General information about autism and life.
NICHCY stands for the National Dissemination Center for Children with Disabilities. Use the search section to find information on Asperger Syndrome.
Autism Resource Guide – Asperger Books
1. “The Everything Parent’s Guide to Children with Asperger’s Syndrome” by William Stillman.
2. “Asperger’s and Girls” by Tony Attwood, Temple Grandin, Teresa Bolick, and Catherine Faherty.
3. “Through My Eyes: a life with Asperger’s” by Quinn Koeneman.
4. “Asperger’s Syndrome: A Guide for Parents and Professionals” by Tony Attwood.
5. “Parent’s Guide to Asperger Syndrome and High Functioning Autism” by Sally Ozonoff.
Note: these books can be checked out from The Autism Program Resource Room located at TAP, 904 W. Nevada, Urbana, IL
Here are some links that my wife has just given me.
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