national guide for autism helps- for a road to recovery!!
Current mood: hopeful
***IMPORTANT WEBSITES FOR MORE INFO***
Autism Research Institute- Defeat Autism Now! (DAN!) project to train physicians and other healthcare professionals how to implement advanced DAN! approaches to the diagnosis and successful treatment of autism. There are now several hundred DAN! physicians worldwide and thousands of children - many of them the sons and daughters of DAN! physicians -- who are no longer diagnosed as autistic and have been mainstreamed into their school systems.
Defeat Autism Now! Webcast Topics
Recovery is Possible
Triggers of Autism
Vaccinations
Diets
Chelation
Nutritional Supplements
Viral and Immune Issues
Naturopathic Treatments
ABA and Other Therapies
Future Pregnancies
Environmental Toxins
Biochemistry
Gut Pathology and Treatment
Methylation
Research
Watch this video of these recovered kids.
Autism, is treatable
Prothera- company designing supplements for autistic kids (also called Klaire labs.) mention Dr McCandless name and get 20% off their items. (discount for spectrum kids) They have some of the most potent probiotics on the market, also hyper-allergenic and milk free. The number is 888-488-2488. they have catalogs they can send to you to know what they have available.
www.needs.com – place to order supplements from many of the recommended companies in one place
www.asdmarket.com –another place you can get many vendors stuff in one place
www.nationalautismassociation.org is carrying some supplements and giving the best price they can, profits go into research and helping needy families with scholarships.
BOOKS RECOMMENED FOR MORE INFO AND EXPLINATION ON SUBJECTS ON HOW TO HELP YOUR CHILD
1 read in explaining the autism reversal- Children with Starving Brains, by Dr. McCandless
Biological Treatments for Autism and PDD, By Dr William Shaw.
The Puzzle of Autism (explains how RNA plays into autism) by Dr. Amy Yasko
What Your Dr May Not tell You About Childhood Vaccinations, by Dr. Caves
Evendence of Harm, by David Kirby
A Drug Free Approach to Asperger Syndrome and Autism. By Judyth Reichember-Ullman, ND LCSW.,Robert Ullman, ND and Ian Lueker, ND. It has every single behavior and how to get treat it!
Autism: Effective Biomedical Treatments, by Jon B. Pangborn, Ph.D. and Sidney M. Baker, M.D
Recovering Autistic Children, edited by Stephen M. Edelson, Ph.D. and Bernard Rimland, Ph.D.
Facing Autism: Giving Parents Reason for Hope and Guidance for Help, by Lynn M. Hamilton
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn Seroussi. A fascinating account of a determined mother and her scientist husband's success in bringing their son out of autism
Healing the New Childhood Epidemics. Autism, ADHD, Asthma & Allergy by Dr. Kenneth Bock
Changing the Course of Autism by Bryan Jepson
********************************SUPPORT GROUPS AND DISCRIPTIONS************************
Biomedical DAN (Defeat Autism Now) Protical Support Group.
http://health.groups.yahoo.com/group/chelatingkids2/ THIS LIST IS FOR PARENTS OR FAMILY MEMBERS OF CHILDREN WHO ARE ACTIVELY CHELATING WITH A DOCTOR , OR WHO HAVE AN APPOINTMENT PENDING TO BEGIN CHELATION. THIS IS NOT AN INFORMATION ONLY SITE. If you are just starting this journey and looking for information, then below are some links that we hope will be of some help to you:
This group is here to support Maine residence whose lives include and are effected or affected by those with ASD. (Autism Spectrum disorder, including but not limited to Autism, ADD, ADHD, Aspergers, PDD, PDD-NOS ect.) We are here to help in the pursuit of "recovering" or bettering their child's quality of life and to achieve a healthy full functioning future. Information on many biomedical treatments such as DAN(Defeat Autism Now)protocol, special diets, (GFCF, SCD, LOD) supplements (Minerals, Amino Acids, Vitamins, EFA's), chelation (DMSA- TD, suppository and oral, DMPS- TD, suppository, and oral, NDF+ ect), secretin, allergy reduction, both IGG and IGE avoidance and elimination, as well as rotation helps can be found here. We are also here to help support the families emotional needs with all we go through while caring for our family members with special needs.
support monitor, Christel King, christelking1@verizon.net, 207-318-3951
To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure. Topics include: mercury detoxification ("chelation"), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD.
The Autism Biomedical Discussion group has been created for the discussion of research and biomedical interventions as they apply to the investigation and treatment of autistic spectrum disorders. The ultimate purpose for this group is to empower parents and physicians to make informed decisions on biomedical treatments for the children in their care.
Topics of discussion include immunology, endocrinology, gastrointestinal issues, allergies, metabolic and mitochondrial issues, genetics, exposure to neurotoxins, possible vaccine injury, dietary and nutritional protocols, pharmaceutical and nutraceutical interventions. All topics of discussion need to be specific to addressing diagnostic and treatment protocols for individuals with autism.
Please be advised that group discussions can involve technical, scientific and/or medical terminology. Parents, physicians and researchers are encouraged to participate. Anyone with an interest in solving the mystery of autism is welcome.
This list is NOT for discussion of behavioral or educational interventions, or for the discussion of occupational and speech therapies. It is requested that you refrain from these topics during discussions on this list.
..> ..> Generation Rescue is a parent-founded, parent-funded, and parent-led organization. Our mission is to share the truth with parents about the cause of their child's developmental disabilities so they can focus on treatment.
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Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.
This is a support group for parents, professionals, friends and family interested in meeting and discussing caring for people with autism and related disorders. Our group will have online support as well as regular local meetings. Particular topics of interest are DAN! protocol, chelation, diets, and various other biomedical topics. All topics are welcome including school issues, district placement, therapies etc.
Autism_LDN@yahoogroups.com a group for those using LDN (low dose naltrexone).
csb-autism-rx-subscribe@yahoogroups.com
The CSB Autism Council was created for Dr. McCandless' patients and consultees as well as those who want to support her ability to conduct non-funded clinical research studies. More than 20,000 copies of her book have been sold from many sources; only purchasing a book (for yourself or to donate) from will admit you to the group.
This is an informational group geared to help you raise your Child(ren) affected with Autsim Spectrum Disorders. Autism Spectrum Disorders include, but are not limited to: Autism, Aspergers, PDD-NOS, Rett Syndrome, and ADHD. This is a list with loads of up to date research, facts, theories, and information regarding all aspects of Autism Spectrum Disorders. This group will not give you information on "THE treatment" to help your child, but rather will try to provide its members with information on ALL known treatments, both mainstream and alternate, for ASD children. From this wealth of information it is hoped that our members will be able to pick and chose those nuggests that will help their child(ren). Every child with ASD is different thus the "magic bullet" for one family may or may not be the magic bullet for another.
If no meeting is posted below for your area we suggest visiting ANDI (Autism Network for Dietary Intervention) www.autismndi.com. "The PASS List" (Parent Support System), managed by Karyn Seroussi and Lisa Lewis, consists of over 150 volunteers in 30 states and 11 countries. These parents have offered to provide support to other local parents "doing the diet". Many of them have founded, or belong to local support groups for dietary intervention.
Note: asterisks next to individual names indicate local GFCF Support Group Meetings
cthomas@bates.edu
jweagles@midmaine.com
recoveringwishes@verizon.net
Christelking1verizon.net
For MAINE residents
Contact the above. All others look on the national site
..>..>
FURTHER DIET INFO
GFCF resources:
www.AutismNDI.com (tips and online support group, and local parent volunteers)
NOT ALLOWED ON THIS DIET- gluten (wheat, barley rye and oats) casein (milk protein) and often recommended soy as well
These things can be found also in school supplies and cuase issues for example
NO NO's most don't think about
Crayola washable magic markers (contain soy- regular ones are fine however) finger paints (contain gluten and soy) colored pencils (all of them have soy) play doe (contains gluten) all color wonder products (contains soy) Palmer Paints (all contain soy) Rose Art crayons (contain soy) stickers back (contain gluten always call company first), bandaids (can contain gluten call company to check), medical tape (woven tape can contain gluten), sunscreen (contain soy)
http://health.groups.yahoo.com/group/GFCFrecipes/ Recipe group for cooking a gluten-free, casein-free diet, especially for chidren. Parents needing cooking support, food questions and want to swap recipes for all kinds of GFCF cooking. Plain and Fancy, Snacks and Family dinners
http://www.missroben.com/ this is BY FAR the most comprehensive place to order allergen free of foods from MANY companies. They have a "free of" area where you can fill out what you can't have and it brings up ONLY items you CAN do from many companies make it easier to find what you are needing
Oxalates are a simple type of compound that is similar in structure to sulfate, except that the sulfur atom is replaced by two carbon atoms. Oxalates may be present in excess for those with Autism for several possible reasons. Scientists have shown that in conditions of bowel inflammation, oxalates are absorbed from the food and wind up in circulation in the body, causing mischief. Oxalates are supposed to all leave the body via the stool! Trying_Low_Oxalates-subscribe@yahoogroups.com
YEAST FREE DIET
Feast Without Yeast: Four Stages to Better Health, by Bruce Semon, M.D., Ph.D
This group is for parents of children who have severe food allergies and who also have an autism spectrum disorder. There seems to be a subset of children on the autism spectrum who have either severe food allergy and/or multiple food intolerances. The purpose of this group is information sharing.
Body Ecology Diet:
This is a commonly understood principle in alternativemedicine/nutrition. The ideal situation is where the blood is kept slightly on the alkaline side of the normal range (7.4). This is thought to discourage the growth of yeast, viruses, gut bugs, parasites and also discourage the growth and spread of cancer. Acidity also leads to conditions such as chronic fatigue, allergies, and arthirtis. It is suggested that every meal contain 20% acid-forming foods and 80% alkaline-forming foods.
Foods recommended on Body Ecology Diet:
Acid-forming foods (20% of meal):
- animal foods (beef, poultry, eggs, fish, etc.)
- buckwheat
-organiz, unrefined oil
-stevia (sweetening herb)
Akaline-forming foods (80% of meal):
- land vegetables (most)
- ocean vegetables
-millet, quinoa, amaranth
- sea salt
- herbs and herb tea
- seeds 9except sesame)
- mineral water (plain or sparkling)
- lemons, limes, unsweetened cranberries, and black
currants
- cultured foods (raw organic apple cider vinegar, raw
cultured vegetables, kefir)
- soaked and sprouted almonds
Neutrals (not acidic or alkaline):
- butter (raw)
- ghee
Foods NOT recommended on Body Ecology Diet:
Acidic forming foods:
- sugar, candy, soft drinks
- flour products
- beans, soybean products, and tofu
- nuts and nut butter
- wine, beer, alcohol
- saccharin, nutrasweet, equal
- commercial refined vinegar
..> ..> Tax Deductions for Allergies
and Chemical Sensitivities
..>..>
..> ..> Section 213 of the Internal Revenue Code applies to persons who itemize their deductions on Schedule A of Form 1040. Total medical expenses, which now include drugs and medicines, are deductible to the extent they exceed 7.5% of adjusted gross income. In addition to the obvious deductions, items such as special filters and air cleaners and the costs of their operation are deductible expenses. Vitamins and supplements, when prescribed by a doctor, are treated as drugs and medicines. All transportation costs for medical care are deductible including bus, taxi, train or airfare as well as out-of-pocket costs for doctor, dental and hospital trips. Auto mileage is deductible at 9 cents per mile. This deduction includes the cost to transport and visit sick dependents. (note: mileage changed- it's 18 cents a mile in 2006..)
Most importantly, Special Foods!TM products and food supplements qualify as a medical deduction when they are prescribed by a physician or other health professional for alleviation or treatment of an illness. (The IRS does not grant deductible status when the foods are considered to be for nutritional needs.) A leading case is that of Dr. Theron Randolph (Theron Randolph, 67 TC 481), where the Tax Court held that a deduction was allowable for "the additional cost of chemically uncontaminated foods". Uncontaminated foods require special care in growing, packaging, and transporting that result in a higher retail cost. The benefit received by patients was relief from medical problems. Similarly, costs for unusual foods required because of allergic reactions to foods are deductible expenses, because they are eaten to provide relief from medical problems.
It is important to note the wording, "for alleviation or treatment of an illness". The IRS regularly refuses deductions for substituting foods "for nutritional needs", such as special diabetic diets or self-imposed vitamin and organic food plans. When prescribed by a physician or other health professional for alleviation or treatment of an illness, the added cost of any special foods over that of commercial foods is deductible. In other words, when you cannot eat regular foods, the costs of the special foods above the costs for common foods you are replacing in your diet, are deductible. For example, if you eat fresh malanga tubers, you would deduct the difference between the cost of malanga tubers and the cost of white potatoes, the item the malanga tubers would be replacing. If you eat malanga flour, you would deduct the difference between the cost for malanga flour and the cost of regular wheat flours. When you use malanga noodles, you would deduct the difference in price between malanga noodles and regular wheat noodles.
Other deductible expenses should include: 1) extra shipping costs, and 2) the additional mileage for shopping over that of local grocery trips, at 9 cents per mile. (18 cents in 2006- check IRS for 2004, 2005, etc rates..)
Finally, extensive documentation is essential in case of a tax audit. Keep all receipts and be sure your health care professional gives you a prescription before you incur expenses.
SOUTHWEST AIRLINES MEDICAL PROGRAM- they will fly the child and parent to the needed Dr. at a highly discounted price. We have used this to send some of our kids/adult friends with autism to see DAN dr's out of state for as a low as 24 dollars for a round trip ticket….. http://www.southwest.com/about_swa/share_the_spirit/medical.pdf
Careforce.- Free Airline tickets from Continental Airline to visit doctor out of
state. You will call Melia Reed at 281-360-5314. All she needs is a note
from a doctor stating that you have an appointment on certain date.
Her fax number is 281-361-7114. You can use this program once a
year. ***NOTE*** This was posted in 2007.
http://www.miracleflights.org/
They work with all these other airline programs and if they can't
get tickets through one of the programs, they buy them for you.
Also, they will fly both parents along with the patient.
Angel flights
AutismLink (www.autismlink.com) has a list of over 7100 providers of service
all over the Country. If you're a parent looking for therapy or support, or
a provider wants to add yourself to our database, we welcome you to visit.
It's all provided free of charge. You can search by zip code to find the
providers closest to where you live. (Speech therapy, Dan doctors, OT, ABA, etc. etc.)
We also have a mentoring program, so if you're new to the diagnosis and you
need some help, we match you up with someone in your area who has
volunteered to be a mentor to help you through the diagnosis and in finding
services.
24 or more hour respites available across the country
We have 12 professional staff members ready to travel to you via bus,
train, plane, etc., to provide 24 or more hour vacation respites for
you and your family. We will either stay with your loved one or
accompany you on your trip. You can visit Professional Education and
Respite Service LLC at www.vacationrespite.com for more information or
call toll free at 888 664 9886. If 16.00 per hour for licenced, fully
insured, experienced Special Educators or Mental Health Professionals
who have worked extensively and provide educational and meaningful
activities with children and adults with a variety of disabilities
works into your budget, check us out. If you want a just a baby
sitter, to watch movies, and eat popcorn with your child, call a
babysitter.
This month's Autism Asperger Publishing Co. newsletter focuses on females on the spectrum from young girls facing issues of bullying to adult writers making their way in society. It's worth clicking and browsing through it.
To Our Daughters: Love the Gift of Who You Are and Love Yourself
How I Spent My Day "Off" Today
Browsing the Bookstore
Kids’ Korner
First-Person Perspective
Females with Autism: A Male Perspective
Thoughts and Ideas as a Woman on the ASD Spectrum
Identification of Females with Autism Spectrum Disorders
Making a Difference
Flexibility
Talk about irony... today, April 1st, is the 1st day of Autism Awareness Month, it’s April Fools Day and it was also Andy’s 1st ISP (individual service plan) meeting (which is a plan for adults in day programs/adult services.)
I don’t even know where to begin except it was a total shock to the system.
I KNOW, because of my work, through friend’s experiences and my own experinces over the years that IEP meetings can be difficult and even contentious, and that school systems can be difficult to deal with… still in all my experiences I don’t remember ever feeling so disheartened.
The first 3/4 of Andy's ISP meeting was fairly meaningless, at least in my book. As part of Andy’s IEP we always had to write a “vision statement” (it’s mandatory in my state) that spoke about our vision for Andy for the future. It would be a paragraph or two… fairly short simple and to the point. Today was a protracted exercise in writing something similar to a vision statement except I found little meaning in any of it. As I listened I knew (like only a parent can know) that the things we spoke of would very likely never come to fruition.
We went over things like his community membership, (going to the Y once a week with his dad…whoo boy!) his relationships (not just having paid staff in his life… yeah Like they are going to change that????) and his “residential life (what he does at home for chores ect…) None of these things will be improved or changed at his day program and it just felt like such a fat waste of time.
When we finally got to the goals and objectives Andy’s coordinator looked to the person who runs the day program and asked so what are the goals he will work on? Well I almost fell over. They are asking the program person before me? I sat stunned. The person who runs the program (who I like) said that there were 5 goals. It was then I found out that it was rare to have 5 goals, usually there are only 2 or 3.
More stunning stuff was to come when I discovered that the OT and the SP&L therapist (each come in once a month or so to do evals or make some recommendations) EACH, in slightly different worded recommendations suggested as a goal for Andy to learn to follow a visual schedule.
I felt sick.
Andy has been following a visual schedule since he was 8 years old…
At least the OT also made a sensory recommendation, BUT I especially couldn’t believe the SP& L person would make that recommendation.
The day this person evaluated Andy I had given her an extremely detailed “social communication” evaluation from an Autism expert who used the SCERTS guidelines to asses him. I SPECIFICALLY asked her to please use one of the recommendations from that evaluation because of the expertise in Autism that the evaluator had, and because I felt the NUMEROUS recommendations that had been made in the evaluation were so important.
Even worse was those of us at the meeting had just discussed in great detail how Andy had to work on his communication skills, due to how his serious difficulty with communication impacted nearly every facet of his life, but especially his behavior and also ability to interact socially with others.
I asked if I couldn’t contact the therapist to discuss other options for his communication goal. I said it was absolutely vital that he have a goal that was related to his social communication skills. BUT, I was told by the boss of the person who runs the program told “no”, we have to have another meeting with everyone present. (I suspect this is because of the complaining I have been doing about the program and they don’t trust me as far as they can throw me.)
Hooo boy another meeting!
Another disheartening thing was Andy’s work. At school he worked about 6 hours a week. I expected that due to the nice skills he had developed and because of the few nice strengths he has, that his work time would be expanded. When Andy started there, I negotiated with the dept of mental retardation for funding for 4 hours a week of a job coach for him (to be shared with another client) so Andy could do volunteer work 8 hours a week. Little did I know that 4 hours are work time, 2 hours are transportation time and 2 hours are for the job coach to do paper work.(I don’t think that there is anyway on God’s green earth that the Job coach could possibly have 2 hours a week of paperwork for Andy when he is only working 4 hours a week)
I am finally, truly, coming to understand that Adult programs are another world.
Because most adults with autism get most of their funding by Medicaid, at least in my state, no teaching of anything but “lifeskills” is allowed. Life skills meaning cooking and personal health, like exercise.
I am finally, truly, coming to understand that all of the hard work we did in the 18 and one half years Andy was in school means nothing in the adult world.
The adult world of day programs is ALL about Medicaid regulations and bureaucracy and little about what a person with developmental disabilities really needs to become more competent and more productive in the everyday world.
I have had many people tell me “you need to start your own program!” If only it was that simple. There is such a teeny tiny amount of funding now for adults that to start a program is all but impossible unless you can get a millionaire benefactor to support the program. I know this for a fact because I know someone who has been working now for over 3 years to get an adult program up and running. I spoke with her the other day hoping that the program may be running in the next year. She told maybe two years if things go well! I also know she has a benefactor and is seeking more of the very wealthy (who are concerned) because to depend on the state or federal government programs leaves you so tied up in red tape that the end result is exactly what Andy has right now.
So on the first day of Autism Awareness month I got another rude awakening into what Andy’s future looks to be…
I wish it was just a cruel April Fools joke… but I have learned too much and I am starting to see the truth.
For those of you out there whose sons and daughters are in their teens I wish you well and hope and pray that their futures will not be as bleak as Andy’s looks to me right now.
For those of you who have children in late elementary school I suggested you start to advocate now for better funding for adult services. We all know how slowly change comes, especially when you are trying to change the status quo.
For all of these children who have been diagnosed with Autism, who are growing older every day and who will completely overload the very little that is available for adults, the future will not be any better, unless we start now.
Hello everyone. It's April 1 and I'm not fooling you...here are some freebies and discounts from AAPC.
During April, AAPC (Autism Asperger Publishing Company) is offering discounts on some of its popular titles. They are also offering a free autism awareness magnet picture frame with each order during April. Here is a link to take you there:
In addition, to kick into Autism Awareness Month, they are providing weekly tips to parents, professionals and individuals on the spectrum. The first week's tip is below:
Today our 7 yr old autistic daughter woke up with a fever of 101. This is not the first time that this has happened or the last. Every time she gets really ill she is able to communicate more freely. She asks questions, names things, tells us things and we see a little less echolalia. Has anyone else had this happen? Has anyone talked to a doctor about this? Is there, maybe, a medication that might create the same response. It is so wonderful to hear her communicate with her oldest brother,,,it is still halted and non typical but so much better and less confusing for all involved MOSTLY for her. Any ideas please let me know. I don't want to drug her to the point of making her sludge through her day. And I don't want to put her on stimulants and make her hyperfocused...Just wondering if there were any ways to make this work.
I belong to other social sites (myspace and cafemom). I posted my recent blog on each site and this is the only one that got any response. I've been on myspace for three years and have lots of friends, some "real-life" and some online, some family even...
Sydney was diagnosed because my mother watched a program that described austistic people as being in their "own world". Sometimes I feel like I've crossed over into hers rather than pulling her into mine as I'd hoped...
I just wanted to say thank you to everyone who read and responded to my recent blog for a warm welcome into your world.
Hi all,
I just received an infomative email from the Autism Society of North Carolina. Even though I live in California, I find their information interesting to review. They have a lot of activities for autism awareness.
This weekend has been so amazing. First, Aaron was actually invited to a birthday party! When I called to RSVP the mom told me that she was so glad Aaron was coming and that there was a quiet room he could use at the location if he became overwhelmed!!! OMG!! I didn't even ask! Everyone else was out of town this weekend, so my younger daughter, Anne, was going to have to go to the party with us. My plan was to hang out in the lobby, parking lot, or at a nearby store so as not to impose an additional child on the party. I gave the birthday mom my cell phone number just in case, took a very deep breath and walked out the door. Two hours later the party was over and everything had gone perfectly. Today we have a Boy Scout den meeting. We're going to make a bat house, take a nature walk, and have a local college professor come talk to us about bats. Aaron is going to love this. He loves building with tools and the lecture on bats will be constantly interrupted by Aaron's questions and observations.
It seems that we never have perfect Aaron weekends, but this is definitely one. It makes me so happy when things work out well for him. It seems that so often they do not. In a few weeks we're going to have a Boy Scout tree climbing activity, which we will pay for and attend, but not participate in due to Aaron's fear of heights. A week or two after that we're having a 2 night camp out with the Boy Scouts. If only mommy could find a way to not participate! It'll be fun, but I prefer sleeping in a bed and taking a shower indoors. I guess I should be happy if this camp ground has a shower!
For a short period of time, HBO is allowing you to watch AUTISM THE MUSICAL online for free. For those of you, like me, who don't have HBO, I was excited about this opportunity.
Autism Speaks just sent me the following link that if you click on it before April 30 and watch the brief ad for a new Chevy car, they will donate money to Autism Speaks. It's easy and free. See details below
Spread the word: Chevrolet has teamed up with Autism Speaks to drive home the message of autism awareness. During April - Autism Awareness Month - visitors to the Autism Speaks website (www.autismspeaks.org), can click on the "Help Chevy Help Autism" icon and take a virtual test drive of the 2008 North American Car of the Year - the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research. Those who complete the virtual test drive will receive a free 30-day online trial of XM Satellite Radio. Read more and visit the Autism Speaks home page to take the virtual test drive.
QUICK AND EASY WAYS TO SPREAD THE WORD:
1. Add the link to your e-mail signature.
2. E-mail everyone in your address book about the promotion and encourage them to do the same.
3. Post it on your MySpace/Facebook page.
4. Post it on your blog, and encourage those who have blogs to do the same.
We need as many people as possible to view the video PRIOR to April 30. Please watch the video and spread the word.
I was working on my computer last night and needed a break from writing mindless brochure copy...for some reason God pointed me back to Foggy Rock and I found a reference to a show called Autism - The Musical. What started as random curiousity ended 93 minutes later with hope and inspiration!
It also made me take a look again at Jackson...at times he seems so high functioning, I forget that we have a life-long impairment. I overlook his endless list-making and obsession with sports and constant one-sided dialogue about inane sports trivia that only he cares about!
Then I see this show and see Jackson in all the children with Aspergers who go on and on about dinosaurs and bullies...
Different topics...same mind...this is our world with Aspergers...
Okay, most of you have seen my post on how I want to open an indoor playground for our little ones with no blinking bells and quarter video games however I need help. HOW DO I GET STARTED? Do I walk into a bank and just tell them what I am doing and ask for money, do I need a business plan and how the heck do I write a business plan. I want to do this so much and everyone in my family and around me keep telling me I need to do a market analysis. Blah blah blah. I just want to do it! Any input would help.
I watched a video online today of a little girl violently attacking herself, hitting herself in the face and ripping out huge patches of her own hair, then slamming herself onto the floor, bashing her head over and over. The same video showed a boy racing back and forth anxiously trying to hurt himself despite the helmet on his head and gloves secured around his hands for his own protection. This same boy, the narrator explained, refused to eat to the point of malnutrition so severe that he had been near death. Another boy bites of pieces of his own tongue, sticks his hand deep into his mouth to rip out pieces of flesh and tears flesh from his face as well.
My heart broke for these children and the people who love them. I watched and an eerie sense of familiarity washes over me. Autism. A word I didn’t know seven years ago, a word I’ve come to know all too well, a word I’ve come to despise.
They ask the questions and you give the answers: Does your child ever bang her head? Does your child sometimes hit herself? Does your child often walk on her toes? Rock back and forth? Constantly cover her ears? Yes! And you’re actually relieved to learn that there’s an explanation. Autism. Then you live with it for a little while. You hope, you pray, you plead and, of course, you fight…
My daughter, Sydney, is a sweet, cheerful ten year old girl who loves to sing, loves to dance. She showers me with hugs and kisses from the moment she wakes up in the morning until she falls asleep at night. We’ve had our share of troubles, messes, mishaps and escapes. She has no real sense of danger and used to like to jump from high places. She made no distinction between jumping off the top of a dresser onto the bed and out of a second floor window to the yard below, which is frightening. She thinks nothing of running across a busy street, sees no reason why she should stay with an adult or in the house rather than running off down the street to pick some flowers. There have been some long nights and some really long days. She’s sharp as a tack though, when there’s something in it for her and she pays attention even when you think she couldn’t possibly be processing anything around her. She’s getting to be a bit manipulative lately and, now that she’s developing a vocabulary of speech, she even tells lies! I know that shouldn’t make me proud but it does, screw it.
Sometimes I see how fast she’s growing and I worry. No, not about boys and missed curfews but about how soon it will be before she’s bigger than I am, before she can outrun me…
Sometimes I get really sad, even bitter, like when I see little girls laughing and playing with their friends or their dolls. Sydney doesn’t have any friends and she doesn’t know how to play with dolls. Sometimes I hear a mother hush her daughter and I want to shake her and tell her to listen to her daughter’s voice, cherish every utterance, because I’m not sure it’s realistic to hope that Sydney will ever talk to me like that, to really share herself that way.
I remember all of the dreams I had back then when I held my beautiful baby girl and watched her learn and grow, all the songs we sang and games we played – before it started, before I knew…
Sometimes I think I can see her right there, just beneath the surface and I wonder if there’s some way to set her free, some way that doesn’t require history to be re-written. I try to have hope because I know she needs me to.
I found that video and I thought something I’ve never thought before, something I never thought I could think – we’re lucky.
As the parent of an Autistic child you read the stories, you learn the behaviors, commit them to memory but words simply can’t describe the horror. I thought I knew but I had no idea. Sydney’s behavior is dwarfed in comparison, quirky almost. It may not make it any easier to hear that my ten year old has the functional language, academic and social skills of a preschooler but I can really be grateful that she’s safe and happy and continues to learn and grow with each day.
So after sitting down and thinking about the recent sundays absolute craziness, I thought Id share with you all how this sunday school class is going. Our current three students (Jordan and Lexi who are both Aspergers and Jon who is considered low-functioning ASD) sparatically turned into 4 when a bright eyed 2 yr old name Matt decided to attend. Now you have to understand that, there are only 2 teachers at the current time who are completely comfortable working with these kids, our other volunteer teachers are still not so sure on how to go about it. So between trying to teach them, keeping Jon from running away (he loves to explore!), keeping Jordan and Lexi (brother and sister) from killing each other, and now chasing little Matt we sure do have our work cut out for us!
I must say though, despite the absolute nut house that it seems to be, its an absolute blessing! These kids are doing amazing, they are picking up on so many aspects of the bible and God's love, it is just awesome!!
Two weeks ago we did a lesson on Jesus washing the disciples feet. The kids made homemade soap and then we talked about ways we could use it to help others. The soap was a big hit and the kids did a great job with it!
Well thats enough of my rambling for now, must finish their lessons for this week!
As I am gearing up for Autism Awareness Month, I am reviewing some files I have which some of you might find useful. I have a word search and crossword puzzle which go with my A Is for Autism, F Is for Friend children's book. All of the words are autism related. I also have two coloring sheets which are fun for elementary school kids. Both of those can be easily printed from my website. Go to www.AisForAutism.net and click on LINKS FOR KIDS. They are the top four. Or email me at AisForAutism@roadrunner.com and I'll send the file.
I also have a kid-friendly (adult-friendly too) autism awareness document which I can easily email to anyone who is interested. I hand these out when I do presentations for kids.
Lastly, I have a word document that I do an email blitz with that is a nice one page autism awareness document detailing three areas (1) general statistics and info on autusm (2) tips for interacting with individuals with autism and (3)wonderful traits of kids with autism.
Thought I'd offer stuff I've already created in case anyone can utilize any of it. If anyone else has some cool stuff to share, please share what you have :)
I just finished watching the end of the show. I DVR'd it and will watch the beginning of it tomorrow. I was in the middle of stripping wall paper, entertaining a 6 year old and chasing two golden retrievers around as they felt they could put my clean laundry away in various rooms while I was stripping wall paper. I only have two days to finish this project as my husband will be home and on Friday and apparently he had a conversation with me that this project would take place during the summer......I must have been in the other room when that conversation took place. But anyways what a great show. A ton of emotions when watching it. I recommend it to all to see if they can rent or buy it if you can.
