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Parents - Meeting The Challenges Ahead! Parents - Meeting The Challenges Ahead… Autistic children, their parents, researchers, therapists, societies and their governments, around the world, indeed, had many challenges ahead of them. Autism had no boundaries – it affected all nations, as clearly evidenced from the many newsletters provided worldwide on topics related to autism. As a parent, however, as I looked to many of these organizations for information, something very disturbing was clearly evident. Parents, as a whole, and the many organizations they had founded, appeared to be in constant conflict with one another. The politics and “bickering” within these organizations made it so that, quite frankly, I preferred to “tune out”, as did many other parents. So many of these organizations seemed to be “fighting to be the best known or best read”, and with this “bickering”, valuable energies that could better be used in actually helping these children, were being wasted as adults – parents themselves - who should have been so united on issues of autism, preferred instead to take the focus away from these children and put it on their personal agendas. Sadly to say, this behavior spanned all levels, from the biggest to the smallest organizations involved in issues of autism. Personally, I found all the attacks on individuals and other organizations – to be nauseating! By arguing among themselves, parents were quickly becoming divided as they aligned with various organizations and left their cause behind. The fragmentation I saw among the parent population was very, very troubling to me! Newsletters and parent discussion boards could be great places to get information (i.e., information files, etc.), but when the content of newsletters or parent discussion boards/groups became nothing better than “office politics” in print it was time to “unsubscribe”. The personal attacks on the character of other parents or organizations who were also trying to help children – attacks that often appeared to go as far as libel – at times by some of the most well read publications in autism, were to me, incomprehensible. The ethics of many of these organizations, sadly to say, were in my opinion, truly lacking! Such activities – activities that divided parents – were detrimental in that if we, ourselves, could not be united, how could we possibly ask the world to unite along with us? Yet, too many parents failed to see this! As such, I felt from the bottom of my heart, that as with so much in autism, I had to keep the best and throw out the rest. It seemed so often I found there were organizations I saw as betraying their cause. As I discussed this with my husband time and time again, I came to find myself saying over and over again: “When an organization becomes more important than its cause, it is time to shut the doors”! Unfortunately, this was something I now believed to be true for many organizations – organizations that would seemingly partner with the pharmaceuticals and the government to “study” things like “genetics”, etc. and take the focus away from vaccines – what so many parents were screaming was the cause of their child’s autism. As such, for the time being, I preferred not to affiliate myself with any organization. Quite frankly, I simply did not trust many, many of them. Given that these children could potentially become no more than “rats” in many labs around the world - because within them was the key to so much more than autism - the need to prevent any abuse of these children, by ensuring that research proposals were clearly reviewed and assessed by persons knowledgeable in issues relating to autism was a concern that weighed heavily on both our hearts. These children had been so devastated already, and given this great concern over the possible dangers of imaginary play as it related to the autistic, now, more than ever, I believed there was a need for one strong parent-led organization, but at this time, I was not sure as to what organization that was. With the final realization of the fact that autistic children, due to the very way in which I now believed they had been impaired, became the perfect subjects for all brain studies because, in my view, the fact that integration of the many parts of the brain simply was not there meant that a great deal of “variables” as they once existed in brain research – like this functionality itself – had simply disappeared! The unfortunate and devastating effects on autistic children had, truly, now made them the perfect subjects to investigate the workings of the human brain and body! With this realization, my concern for these children was magnified tremendously. The only way, I believed, these children could truly be protected from further harm, was by putting in place research facilities under the direction of one strong parent led, independent organization. Within each state, research facilities could submit their proposal for review in terms of both physical and emotional safety as it related to these children. In my opinion, only persons truly knowledgeable in all areas of autism, including diet, supplements, immune system issues, behavioral issues, physiological and neurological issues could assess the overall impact of future studies on these children. Given my concerns over the role of pretend play, it was also a huge concern that behavior therapy for these children also be somewhat uniform in that all therapists, be they PhDs in psychology, or high school students, had to be aware of issues relating to the self and imaginary play in the autistic child. Clearly, in my opinion, much of the current therapy as it related to behavior modification for autistic children could be very, very detrimental to them later in life. In addition, therapist, in my opinion, needed to have a much greater understanding of the workings of the autistic brain and current research as it related to mercury and neuron degeneration. The theory I had put forth simply explained too much for it not to be taken seriously! Therapies for teaching language via motor or olfactory input, I believed, should be investigated as viable options. The simple fact that autistic children focused not on the eyes, but rather on the mouth, clearly indicated that “motor” input was more important in communication for them, in the production of speech than was visual input. There were just too many factors that seemed to point to this fact! Behavior therapy, as it related to these children in my view, was in need of a complete overhaul! The good news, however, was that with the greater understanding of the issues, more children could perhaps be cared for at once. Training centers to train therapists, parents and society as a whole in so many of these issues were desperately needed as were new materials for these children. There was, in our opinion, no more time for divisions among parents. It would require the work of many to come up with the tools that were now necessary for these children. More than ever, one voice was needed for these children – one voice to address safety concerns, first and foremost, dietary, physical and immune system issues, educational issues, behavioral issues, research issues, political issues, and fundraising issues. The challenges in each of these areas – alone – were huge, and small, divided organization, in my view, could not even begin to address them. Given that autism spanned all nations, there existed a need for an international, parent-based organization. In my view, parents had to be very involved in this organization in order to help best protect our children. The opportunities for parents of the autistic were now greater than ever – both for their children and for themselves! Parents needed to stand together in order to accomplish the objective of saving as many children as possible, as quickly as possible from the clutches of autism. If some of these children, indeed, did also come up with their “code to life”, truly, what incentive did they have in breaking the code – the real code to life? So many issues now weighed so heavily on our hearts. We had to act and act quickly – as one united voice! I realized there were many organizations currently involved in autism matters, and that, in many cases, parents had “made autism their life” – as I had done in the past year with the writing of two books and the creation of a website. I was, indeed, overwhelmed, and honestly, I, personally, wanted my life back! :o) I was sure many parents felt the same way. I, personally, could continue to be involved somewhat in issues of autism as they related to the creation of materials for these children, yet, I knew, personally, that I had no interest in “a career”. I had left corporate life for a reason, and in my mind, I simply could not see “going back”. :o) As a parent, my focus, once again, had to be in “saving Zachary”! I had provided the insights I could in order to help parents move forward in so many issues, but there would certainly come a point in time, in the near future, where I hoped to return completely to my family. I, personally, simply wanted my life back. I was tired of sitting in front of a computer, of missing the beauty in each and every day. Yet, I knew many parents, parents who spanned many fields, had the energy, the drive, and the determination to continue on, very strongly, in this battle. Our struggles as parents had been great, but, perhaps now, some of the burdens could finally be lifted – if we joined together. To move fast would require the best in many field – neurosciences, immunology, blood/urine/hair analysis, nutrition issues, behavior therapy, education, speech therapy, programming, video production, and so many other areas – and yes, attorneys would be needed too, to help in the protection of these children. Surely, there were already many parents who had devoted themselves to autistic children who could fill these roles. The best in talent, of course, included those parents most devoted to working with these children. Focus groups would be necessary in order to find common threads in so many areas, and by definition, research had to now involve not only children, but their parents as well. In reality, the pharmaceuticals now actually, could learn a great deal about the human brain simply by coming up with specific questions for parents of the autistic. The savings in terms of research alone as far as finding the answers to so much by first narrowing the “field of study”, again could be very substantial. Parents, because of their countless hours of observations in terms of their children’s behavior, in addition to autistic children themselves, now held the keys to a great deal of information too and that, surely, had to be worth something to science! The tides of autism had turned indeed! If the pharmaceuticals and indeed society wanted this information given how our children had so been failed in the past, they could now pay for it! Standard fees could now be set with proceeds going directly into programs to help these children. This was indeed, quite a twist of fate! Only a “for profit” organization, self-sustaining in providing research assistance to other organizations, teaching materials to education systems to help integrate all children, etc., could possibly even begin to accomplish what would be needed for these children. Behavior therapy could now become actual research, and as such, therapy could benefit not only autistic children, but society itself as through the eyes of these children, man could now come to understand a great deal more in terms of the workings of each part of the human brain! The opportunities for parents were truly exciting in what could now be accomplished to help save all autistic children. They could now, if they so chose, to actually make work for themselves - with pay - by becoming part of an organization devoted totally to the recovery of these children and to the furthering of man’s understanding of the autistic and human brain. Waiting for the government to come up with answers for our children had resulted in very little movement forward in the area of autism. Parents had to take on a much greater role in providing what was needed for their children. Parents working within these organizations could undoubtedly also bring their autistic children to the training facilities where they worked also… to have them participate in both research and actual training/behavior therapy. Surely, “training”, in a specified number of hours per week, could be offered as a “perk” in order to attract the best, most devoted parents out there! This, in and of itself, could be a powerful incentive to many parents as being part of this organization would put parents on the cutting edge of new tools, therapies and treatment options! Many of the materials that were needed, indeed, could then be sold to schools to help further integration of these children within the school systems! Since autistic children needed to be taught in a very “ordered” manner – a building blocks approach, in actuality, many of the materials needed for autistic children would also be ideal for any child. A vision for a “for profit” parent led organization, was truly a good idea given what could be learned from observing these children and the fact that such an organization could, truly, become self-sustaining and I certainly hoped all parents could now see that! Never before had man been able to study the human brain, its specific regions in functions, the way it could now do through the eyes of autistic children whose brain regions acted as independent processing units. Given that so much in the autistic child could now be understood based on this theory alone, surely, sensory input integration and relay failure had to be at play. In my opinion, with simple behavior therapy alone, man could now see – through the eyes of the autistic child - the workings of the human brain as never before. But, herein was also a great danger – the potential abuse of these children by turning them into nothing more than “lab rats”. That simply could not be allowed. All autistic children, at home or in institutions, now more than ever, needed to be protected from such abuses! As such, once again, I encouraged parents to put organizational politics behind them and to stand united as opposed to divided. Talents in newsletter writing could now be used to inform the world as to the latest finding on brain functioning. The opportunities were there for several writers, editors, etc. for completely new, in depth publications. Business talent, research talent, medical talent, education talent, programming talent – and simple parent observations - all of these were now desperately needed! Not only did the children of the autistic hold valuable insights into the workings of the human brain – the parents of these children did too! The countless observations of parents that had once been cast aside and thought to be worthless chatter were now among the most precious of all observations – the keys to helping man understand himself in so many areas – the keys to perhaps so many illnesses and disorders! The talents of parents that had once been so divided could now be put to better use by uniting all parents and helping to recover all these children! The road to do so was still long, but at least now, parents held some very critical keys to breaking more than just the code to autism! Autistic children, once almost thrown away by society, had, in an odd twist of fate become one of its most valuable assets! I encouraged parents who had children in institutions to make sure these children were not used in any way in any research study, be that through pharmaceutical or behavior therapists without first ensuring that research was safe and in the interest of the child or autistic adult. These children also had to be cared for because institutions, in my opinion, were definitely not in their interest. Perhaps given the fact that they exhibited the most extreme cases of certain brain functions now made it so that they held even more keys within them… and that finally, they too, could get the help they needed as science continued to investigate the functioning of the human brain! As a last reminder to parents – even though I knew there were indeed many good organizations out there, truly, we needed one powerful parent led organization in order to accomplish what needed to be done to help protect these children and allow them to leave the shackles of autism behind. As such, as much as parents were emotionally tied to the organizations they had helped build, emotional ties should first and foremost be to the children affected by autism, not to an organization. When organizations become more important than the cause, then it was time to shut the doors! There was plenty of work to be done by everyone and that work would best move forward with strong, determined and united parents! The work ahead for parents was indeed overwhelming, but, if parents could finally create one strong parent led for-profit organization, the best in many fields could be attracted to help with this work on many fronts. Indeed, there was a great deal of work to be done – and I, for one, hoped parents were strong enough, as well as, determined and committed enough, to meet this challenge. There was a final challenge I wanted to put before all parents and indeed, all of society, it was a challenge as it related to vaccinations. In my opinion, given the wealth of information these children could now provide to society, there was a real fear in my heart as it related to the safety of currently autistic children, and all children, around the world – when viewed from the perspective that “more autistic children” would be great from a “research perspective”. In my opinion, the very fact that the pharmaceutical industry had so failed parents – and, indeed, society – in getting to the bottom of the possible autism-vaccination link – made it such, that, quite honestly, I could no longer trust this industry as a parent, and as a person and member of society until I had once again been provided with a reason to trust this industry and those in government so closely affiliated with this industry. As such, I encouraged all parents of the autistic to stand firmly together in the resolution that: No autistic child would be involved in any government or pharmaceutical sponsored research unless the government and pharmaceutical industry did the first critical steps necessary to rebuilding this trust. These first steps, outlined in a section to follow, entitled Society – Worldwide – Meeting the Challenges Ahead - in my opinion, were necessary to rebuilding a trust so blatantly violated and necessary in ensuring that currently non-autistic children were protected too. As devastated as our families had been by autism, our future potential devastation could be greater yet if our children were used as “rats” by the pharmaceutical industry to further their own interests. Many parents already suspected the pharmaceutical industry had played a significant role in the devastation of these children. Yet, the government had chosen to side with the pharmaceutical instead of with parents in addressing these major issues for society. And now, if a possible link did exist with anesthesia, as I suspected it very well could, and the government failed to look into this, how could we trust either the pharmaceuticals or the government to do what was right for our children? Society had no reason to trust that the pharmaceuticals or the government would act ethically in the future given their current refusal to make public or manipulation of documents related to the possible autism-vaccine link. Autistic children now had the potential within them to move science forward at lightning speed and save literally billions in research and rehabilitation costs in many fields. It was estimated that alcohol alone cost the US over 166 billion annually in lost wages, rehabilitation programs, etc. – and that was only one area of study and rehabilitation! The natural opiate effect of casein and gluten on these children surely could be used to study the effects of opiates and other “drugs” on the human body as well. Autistic children, and their parents, in this ironic twist of fate, had now, indeed, become a rather valuable commodity to the very industry and government agencies that had possibly contributed to this autism epidemic. It was time parents of the autistic stopped giving away their observations. Within these observations, were now the keys to not only providing society with invaluable insights to so many other illnesses (bipolar, schizophrenia, depression, any disorder related to lack of control of one’s emotions, diabetes, epilepsy, personality disorders, etc.), but also the keys to getting the help for these children – the help they so rightly deserved and had for so long been denied! If society wanted parent observations and these children in research, as far as I was concerned, parents and their autistic children had to be fairly compensated for providing these invaluable insights into so many areas of study and centers had to be opened specifically for the care and therapy of the autistic! As such, I encouraged all parents to unite into a “for profit” organization in order to use funds from “parent observations” and research involving autistic children to provide services for all autistic children in the areas of necessary lab tests/panels for diet/supplements needs analysis, analysis and treatment for heavy metal contamination, behavior therapy and so much more. Parents could accomplish these goals and provide a great deal for their autistic children, but they would now have to stand – completely united in this issue! If these children and their parents could advance science and move it forward like never before in so many areas, saving the government, the pharmaceuticals, and insurance companies potentially, over time, hundreds of billions of dollars in research, education, therapy and rehabilitation costs, then, it was only fair that in advancing the rest of the world, these children were also helped to take their critical steps forward to leave the shackles of autism behind! I hoped this realization would be enough to finally unite all parents of the autistic into converting all autism-related organizations into one organization standing firm and united in resolving to get to the bottom of the possible autism-vaccination link, as well as in providing the care these children so desperately deserved. Parents finally had within them the keys to help their children and help themselves recover financially from the burden of autism. Although there had been organizational differences in the past, the opportunities that lay ahead for parents of the autistic and their children, were now brighter than ever. The silent voices and pleas of autistic children and their parents could finally be heard around the world! Surely, for all autistic children, we could finally put our differences aside and stand united – ONE VOICE! |
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