I am a single Mom to a beautiful girl who just happens to have Autism. We went from the depths of despair to unimagineable success, primarily by using my Mommy instincts, common sense, a first do no harm mentality, and often doing the exact opposite of what many s0-called experts thought was best.... (more)
No MSG, No Aspartame, grow my own garden, have our own chickens for eggs and only buy locally grown beef and poultry. I look for natural cures first and try my best to stay a healthy distance from standard allpathic physicians who seem to think it is "weird" not to be on some prescription and who never seem to look at causes or prevention just what drug can maintain you for the rest of your life.... (more)
Yes, how sad. 20 years into the worst epidemic in the history of our nation and no one can tell a worried Mom how to prevent autism. Billions of dollars in research and not one treatment nor cause found, perhaps because they refuse to look at what they already know is the cause and what tens of thousands of parents are saying caused their child's Autism. Despite this, there are in fact recomendations for being as safe as possible and perhaps cutting your risk. First start taking vitamins and cleaning up your environment at least one year before getting pregnant. Stop using poisonous products in your home...bug sprays, weed sprays, etc. Use only non-toxic cleaning products. Invest in a good water filter. Eat more natural foods and try to avoid GMOs. Never touch MSG or Aspartame. Have all mercury amalgam fillings removed and replaced with composite and then do a good detox regime, again at least one year before getting pregnant. Avoid mercury sources such as large fish, tuna, etc. Investigate vaccines thoroughly. Learn why they started recomending vaccines for pregnant women despite never having been tested, and thoroughly research vaccines for your child. Consider using a modified schedule or keeping your child home longer and starting later when they have somewhat of an immune system on their own, or not vaccinating at all. Breast feed as long as possible. Since they are now admitting that Autism is environmentally caused, that may trigger weaknesses in some children (the genetic component), it is important to pay attention to anything and everything around you and what you put into your body. And no one but you has only your best interests at heart, all others have alterior motives. Trust yourself, your Mommy instinct. There is talk these days of Mitochondrial disorders, be aware that you can get these from the parents, or certain drugs and chemicals can cause them. If a mitochondrial disorder is present in your child and they follow the CDC vaccine schedule, then they are at a severely increased risk of a serious vaccine reaction and consequently Autism. If you are worried about not vaccinating at all, at least find out if your child may have a mitochondrial disorder, which would make your decision much easier. It is believed that the current rate of mitochondrial disorder in the U.S. is around 1 in 50. Not too far off of the Autism rate. These could be the canaries in the coal mine. A serious illness or vaccines can start a horrible downward spiral for these children taking them quickly from normal to ill and disabled. I would check into the testing for mitochondrial disorders before vaccinating. If you think that sounds like a big extra pain in the ass, you should try autism!
Yes, how sad. 20 years into the worst epidemic in the history of our nation and no one can tell a worried Mom how to prevent autism. Billions of dollars in research and not one treatment nor cause...... (more)
Following a schedule as a treatment is a new one on me. Yes, most children with autism like sameness and routine and for many following a schedule is not a treatment but a necessity, like breathing, because the horrific meltdowns that can occur when there is change can make life unbearable. For some children it can be as silly as taking a different route home in your car. They will insist on the same route, every time. There is a story of a child who would only eat chocolate pudding and it had to be cooked a certain way, and she would watch her mother and if she deviated in even the tiniest way, she would not eat it. So, I have never heard it referred to as a treatment, in fact in my mind it would be the opposite of treatment. A treatment to me affects or changes the behaviors that are part and parcel of autism but are so different as to be unacceptable to the general public or make life unbearable for other family members and hence need to be addressed. Insisting on routine, sameness, and following a schedule to me are "symptoms" of autism, not a treatment. And when they have a huge impact on family, parents, and total strangers it is something that should be tackled if possible as part of a behavioral program.
My approach was just the opposite of routine. Once we had made some huge headway with the GFCF diet and with ABA, all was fair in love and war, and autism. I took the approach that the only thing she could now expect was the unexpected. I had decided already that the world was never going to come into her world, so I had to do everything in my power to bring her into our world. So, I took her skiing, skating, on airplanes, to zoos, museums, birthday parties, etc. If I could think of a scenario or situation where she might need to learn to reign in her own feelings, find ways to deal with over-stimulation or feeling overwhelmed then that is what we did. Even if it failed and entailed a 3 hour drive home, I took that chance. We did social stories prior to try to prepare her for what might happen, and the series of events that typically take place at such and such a place. We talked about it and what her fears might be. And this approach has been a huge success. She is now adventurous and daring and actually relishes in the surprise or unexpected. But this was training, just like everything else we did, it was well thought out, planned, and alternative planned.
But I will also admit that you have to attain a certain level of functionality before you can take on this approach. They have to have some experience in calming themselves, reigning in their own feelings and emotions when overwhelmed, demonstrate that they have some personal self-control when the unexpected happens. The school tells me that she is sometimes thrown when a fire alarm goes off or once they had to initiate a school lockdown, which might be scary for any kiddo to deal with, but she quickly brought it into perspective, calmed herself and went on her way with the others. I think this was a learned or taught ability that carries through or is generalized to other things in her life now. For us....and those two words are critical here...for us, this was a success beyond imagination. It is why she can now play in a symphony, try out for community plays, be a cheerleader, and compete in table tennis. She still can get overwhelmed, but she knows how to pull herself back. And if things have been especially tough on any given day, she heads for her grandparents house next door, where they offer calm, routine, sameness, a place where she can rock, put on headphones and shed the worries of the day. It is her refuge and why it works for us to offer these two polar opposite worlds to her with great success. So my advice is to start slow, work on self-control at home first, then school, then on to other things. You can't just take them to the symphony on a whim and pray it all works out. Nothing in autism is easy, but when it works the rewards are priceless. It could be the new Visa advertisement....Wasted symphony tickets $200.00, 6 hour round-trip ski adventure that never materialized $150.00, birthday party early exit $20.00, watching you child with autism ski down a mountain.....Priceless!
Following a schedule as a treatment is a new one on me. Yes, most children with autism like sameness and routine and for many following a schedule is not a treatment but a necessity, like breathing,...... (more)
My daughter was diagnosed on the most severe end of the spectrum, the bottom 1%, one of the most severe cases. Many have observed that while girls are affected far less often than boys, the girls are often much more severely impacted. I was told that my daughter would probably never speak, was severely mentally retarded and would never attend a regular school. In fact I was told that as she got older and all the self-injurious behaviors and anger was turned on me, and she became too big for me to handle, I would have to have her institutionalized. I was told to go home and get a lawyer to help draw up a "life plan" and just love her until it went beyond what I could physicaly handle. But since I knew my daughter was not born with autism and I blame vaccines, I decided to treat her condition as a traumatic brain injury, which I believe it was. One of the first treatmens I instituted was the GFCF diet. My daughter was what I call a "nuclear reactor" she looked as if I had taken her off of heroin. The withdrawal was horrific. Then she slept for 48 hours straight and over the next few days slowly started coming out of it and we would never be the same. 10 days into the diet she pointed and said "our car". I dropped to my knees and cried, we were definitely on to something. Language increased from there adding 20 to 50 new words a week. Within a few months we initiated an ABA program which would have been impossible before the diet. Since starting the diet she had stopped having hundreds of meltdowns a day, had stopped biting herself and pulling out her own hair, and she stopped the horrific banging of her forehead on any available hard surface, and the rocking and hand flapping had slowed considerably. The ABA program took off and she was mastering hundreds of goals a week. The therapists and me found it hard to keep up with her. A few times she was accidently given forbidden foods we saw definite reactions and regressions. Every move we made kept proving we were on the right track. And the biggest change of all, was she was happy, the happiest child I have ever met. From misery to joy all from a diet. Some have criticized parents for instituting the diet, even claiming we are "experimenting on our children with a scientifically unproven treatment." I have seen parents that would allow half their child's brain to be removed in order to stop intractable seizures and yet there are those that worry about a custom diet. We supplemented her diet and ensured adequate nutrition, and in fact since instituting the diet she started eating a greater variety of foods that she had refused to touch before. Her diet became better and more well rounded without the gluten and casein that she was using to self-medicate. After years of ABA and sticking to the diet, my daughter has attended public school with great success. She is completing Jr. High and has made the honor roll every term this year as an 8th grader. She just finished trying out for High School cheerleader for next fall and was picked for the varsity squad. She plays 6 differnt musical instruments and writes her own music. She is very smart, has a photographic memory and is very articulate. I have no doubt we would not be where we are today without both the diet and our exceptional ABA program. Some people say she is a miracle, but that takes away from all the really hard work that she and a lot of other people have done to get her where she is now. Do we still have autistic issues, yes we do. She is still immature for her age, she has trouble with some social situations, and she is very literal and a visual learner. She still has some narrow interests as well as some sensory issues such as sounds that send her diving for cover. She still really doesn't realize that there is any danger in the world, that there are people out there that could have ill intentions and she is not capable of reading that or having "gut feelings" about people. She loves everyone and is sometimes too friendly to strangers. But compared to the gloom and doom predictions we started with and where many other children are that we met at the beginning and who never got the treatments and therapy that she did I will take what we have now happily. And we are never done, never done teaching and learning. She still has great spurts of improvement and exhibits abilities beyond what she has ever had before, so we still have great faith that one day she will be able to live independently, have a job in music, and a fulfilling and happy life, free from pain and hopefully prejudice. I know that the diet does not work for every child, but I always say it is worth a try, after all it is just a diet, and if it doesn't have the dramatic results that it did for us and many other families that I know, you can always go back to a regular diet. But I say first make sure that you try it, and make sure that you are not unknowingly giving gluten or casein in hidden forms. It is not easy to do, the diet, it takes a lot of research, hard work, pre-preparation, supplementation, and you have to be on top of everything. Extra prep for school parties or birthday parties so your child is not left out. There are also now enzymes available that take care of the gluten and casein proteins if there is ever a time when it is unavoidable. But I do not recomend using these in place of the diet and use them sparingly for special occasions. One woman told the story of her son, who like my daughter reacted amazingly to the diet, and when he was a teenager they challenged the diet, seemingly without a reaction, so they slowly went back to a regular diet. six months later their son was diagned with schizophrenia. Needless to say, they went back on the diet. But how devastating to have seemingly beat the autism diagnosis only to be hit with that. There are many anectdotal stories of those with schizophrenia having the same reaction and luck with gluten free as we are seeing with many on the autism spectrum. It needs some serious investigation, better than the lame study that was done so far, going against everything parents told them, and literally setting up the study for failure. It was a poorly devised and poorly conducted study with so many flaws it is really worthless. But trying the diet, doing it correctly and conscientously is woth it, and might just be the miracle that it was for us.
My daughter was diagnosed on the most severe end of the spectrum, the bottom 1%, one of the most severe cases. Many have observed that while girls are affected far less often than boys, the girls are...... (more)