Mary Poppins and a Mother’s Welcome Guide to Autism Posted in AutismKey on January 24, 2011 by C.A. Curie, my pen name.
The “Mary Poppins” approach of teaching through play, while being highly animated and visual is the KEY to curing a child’s autism. “Cure” in the sense that a functional, happy life, complete with a driver’s license, complex relationships, a career and a family of their own is possible.
Will they always be quirky? I do hope so. Most people are. However, we must encourage our kids to communicate and step out of their “safe” place in order to participate in our “typical” world. Even the most passive and quiet caregiver can find ways for “a spoonful of sugar to help the medicine go down.”
Is it really that simple? In theory, yes. In application, like anything else, your children will get out what you put in. Whether choosing the son-rise, floor time or another preferred technique, there are consistent factors which can be applied now and throughout the healing process. Let’s stop and say that there is the same percentage of “low functioning” autistic children as there are “low functioning” typical kids.
The lack of appropriate therapy is creating the perception of excessive cases of low function autism when in reality, there are really excessive cases of low functioning therapy. Furthermore, the guilt and blame needs to stop as it serves no healing purpose. Parents are where they are and what’s done is done. Globally, we are at an autism rate of 1 in 58, with less than half of all persons screened. That presents itself of a possible rate of 1 in 30. As soon as you hear of meltdowns, speech delays, tearing off socks, picky eating, or any number of the early signs of autism, it’s time to get a screening!
If a parent cannot get into a pediatric neurologist, they should be extremely careful about general practitioners. The overwhelming amount of GP’s in this country cannot tell you the early or even later signs of autism. In fact, unless you have a stereotypical, wall-staring, head banging, speechless child like I did, they won’t diagnose or even refer you for a diagnosis correctly.
In the case of my older son who has other spectrum disorders, it took three-and-a-half years of misdiagnosing, improperly medicating, treating without a proper diagnosis (winging it), and my teen’s near-suicide before the GP would finally refer a specialist. In fact, it was someone else in his office that finally made the call. My older son’s incredible co-diagnosis of OCD and autism was followed eight days later, thanks to a pediatric neurologist who emergently self referred. In that moment, I swore not to jump on any bandwagons, but only to do research and implement positive daily techniques, whatever those would turn out to be. I swore to love, learn, crusade and battle.
So what do you do when autism is suspected? I caution the use of national organizations who boast autism anything. Many are greedy money machines that support big payrolls, print brochures and assure you of a “no cure” future so you will remain at their mercy. If this makes readers a little uncomfortable or anxious, it should because every step a parent takes from this point on will make or break their child’s future and things need to be taken seriously. Once autism is suspected, a referral to a pediatric neurologist should be demanded because getting an “official” diagnosis is critical to receiving access to services along the way.
The next step is to get in touch with Autism Speaks. I am not affiliated with them in any way, but I know what I know. Every city, every county and every state has resources that can assist in a pre-screening, which will give you a head start and get the early intervention wheels rolling. Search the Internet for, “getting a child screened for autism,” then add your city and county name to the search. If you don’t have a computer, ask a friend or go to the library. Now is the time to learn to make things happen as this is a skill you will need to use for the rest of your life. If your child is older than the zero-to-three or four-to-five year milestones (the critical windows), there are still resources available. Tell people that you see red flags and want to know where to pre-screen while you wait for the “official” diagnosis from a pediatric neurologist.
Sadly, depending upon where you live, this can take up to 18-to-24 months and in extreme cases, even 3 1/2 years of waiting. There is no denying that there are states far superior than others in the treatment of autism. There are eight that are very good and even then, it goes county-by-county and school system-by-school system. Even more specific, quality of services can vary from teacher-by-teacher and therapist-by-therapist.
In general, however, the state you live in will determine the rest of your child’s life. I am foreclosing on a ten-acre horse farm worth a half-million dollars and had to divorce an in-denial husband to get out of the 48th ranked state. After fourteen months of hopelessness and only one therapist with any accurate knowledge, numerous blogs and over 1,000 phone calls, including personal contact with the Governor’s office, WE ran out of time. “Ran out of time” meaning my son was already three and even basic therapy was nowhere in sight.
You will need to put this to memory and you will hear this over and over again: 70% of a child’s learning and language foundation is DONE by the age of three. Does that mean your child has learned 70% of everything he will learn? NO. What that means is that his OS (or operating system), like Windows XP, Windows 98, Linux, etc. or his learning platform, is almost completely in place. By this age, the way your child learns becomes set.
You will still have a few windows before the age of five, but after that, it is all data input, interpretation, memorization, reasoning and implementation. If you bought a computer with only an operating system, you would still have to add programs and applications. These “brain applications” can be easier to download into the brain during these early critical years and will be much harder and cost much more time and money later.
This leads to importance of GETTING YOUR CHILD VACCINATED. Though they seem to trigger autism, and in my personal research and experience they certainly do, vaccines force autism to show its pre-disposed face at a time when early intervention and the greatest chances for full recovery are still probable. If you could know three years ahead of time about any disease or disorder which could be treated and cured, wouldn’t you want to know?
Vaccines do not cause autism. This lie was recently dispelled by the scandal surrounding a doctor’s alleged “conclusive research” which was manipulated into a million dollar, award-winning horrific myth, which has created a lot of confusion and left a huge population of kids susceptible to insidious diseases.
Now, back to Ms. Poppins. I will be referring to the technique of learning-through-play by using this phrase. I coined this to make a more visual and understandable role model for parents. Get down to their level, in their field of vision, use common sense research, then shoot for the stars. Do not limit what you think they will learn and do not try to control how they will learn. Guide them.
Although each one of these kids is different, the general proven approach to treatment is the same. Imagine you are stranded in Russia and no one speaks your language for three or four years. Can you imagine the relief when someone walks up and says, “Hello, are you from the US?” You will latch onto this person through any means necessary — your hands, pictures, sounds, or pointing and you will begin to try and communicate, exploding like a capped shaken can of soda. Welcome to autism.
If your child is speaking and even has nearly perfect speech, then you need to consider echolalia or Asperger’s. A rose is a rose and we are still talking about autism. What triggers this speech is a combination of factors. I was told over a 14 month period that my son was “not speaking because I was an older mother” and that “older mothers tend to meet their children’s needs so the child has no reason to speak.” Then I was told to “hold two different foods up in front of him and DON ’T feed him until he says which one he wants.” To make matters worse, the doctor’s assessment and advice was reinforced by a WIC representative. This is the result of residing in the 48th worst state with regards to autism resources and lack of awareness.
There’s no excuse. The research is written and is published for FREE . What do you call the medical student who came in last in his graduating class? A DOCTOR. Degrees will quickly become nothing more than a piece of paper hanging on the wall if the education does not continue. This is especially true with autism.
My own family members have masters’ degrees in education and admittedly, were completely unaware of “modern autism” and its current treatments. Stopping one’s study at graduation can be equated to getting a driver’s license. When a driver’s license is obtained, a person is only at the beginning, but should continue, and hopefully learn the rules of the road and acquire additional knowledge and experience. Keep in mind, at this point, they are already operating a deadly weapon! However, should your state institute laws such as “traffic circles” or no cell phone usage, a person must learn those too.
How can these doctors get by without knowing anymore about autism beyond what they may or may not have learned even just two years ago? They are all “flying under the radar,” as I was told by a state-level Medicaid administrator. Absolute negligence is what the history books will determine. This I am certain of. Hopefully, experiences by most parents will not be so extreme. Abundant resources were not available during my son’s early years. This will help get you through so many obstacles including the lack of awareness.
The Autism Speaks’ booklet and guide entitled “The First 100 Days of Autism” is FREE to caregivers of newly diagnosed children. This was and is one of the single greatest current tools available. Remember, the correct advice is usually the FREE advice.
Now back to the “expert” recommendation of depriving my child of food. Obviously, my son began to scream while staring at his few preferred foods that were not being fed to him, while I continued to follow this advice and waited for words that would not come. I then immediately began again to research the correct techniques.
The ‘picky eater’ or ‘starch junky’ syndrome is medically known as gustatory disorder and is commonplace within the autism spectrum. Furthermore, ridiculous notions that a special diet, pills, chelating (techniques which assist in the removal of heavy metals from the body), a DVD, a bedtime story or a magnet mattress will by themselves cure autism are absurd and again, part of the billion dollar industry thrashing already broken lives.
What needs to be emphasized is a “healthy body, healthy brain.” With gustatory disorder being so prevalent among children with autism, how do we achieve a healthy body? Start feeding a child supplements such as Ensure and Pediasure. In most states, when prescribed, these healthy drinks will be covered by your private insurance, WIC or state insurance (Medicaid). Talk to a nutritionist, usually available through WIC or even through a school, about balancing a healthy diet by the use of supplemental drinks. Though we may be in uncharted territory on some issues, healthy eating and balancing a child’s diet are nothing new.
My son’s speech came almost immediately following the end of the “diet” and the beginning of the supplemental drinks and yes, Happy Meals.
Nothing replaces YOU. You are the most important therapist, soldier, advocate and source of love and guidance that your child will ever have. Keep in mind, for years, the Board of Pediatrics has advised a minimum of 40 hours per week of ABA (Applied Behavior Analysis, the single most important therapy for the treatment of autism) and a minimum of 25 hours per week of speech therapy for a minimum of 2 years. It is logical that a toddler will not be moving into the school OR doing weekends. In fact, for most states, a parent might get a once-a-week, twenty-minute visit from the school’s occupational therapist.
It’s amazing that states are taking President Obama’s autism stimulus money, while the overwhelming amount of them are barely scratching the surface. Just wait until the “autism president” finds out — and he will. Perhaps if our President were to award according to what is actually being provided state-to-state, there might actually be an incentive for the 42 to learn about autism, while the 8 other states that are getting it right might get the funding they actually need and deserve for the tremendous work they are doing. I was born in Washington DC and they heard me cry then. I wonder if anyone will hear my cries now?
It is crystal clear that the majority of therapy will be done in a child’s “natural environment,” which is now the technical term for the home. This also means that you will be responsible for the minimum 65 hours a week of therapy for your child’s needs. Don’t panic. There are ways of doing this, even for a single mom like me. Remember, we are going to learn to teach through play as Ms. Poppins suggested. Either way, you don’t have a choice. The fact that you’re reading this already means you do care.
If you want success, it begins in and predominantly happens in the home. “Not even the greatest therapist or therapy would have success without the continuity and consistency in the home.” This quote was supplied to me by my cherished first OT. I refer to these professionals as mine rather than his because in all honesty, I am also the student here as you will be too. Seeking out therapeutic situations and environments where you are included is absolutely essential. Therapists who ask you to leave for the whole therapy session will not be beneficial. It is the continuity and consistency of therapy done between all of your child’s environments which will bring the most success.
Transitioning from one situation or activity to another are tremendous hurdles in autism. Everyone must be on the same page doing the same techniques (which are showing positive results), or you will not have success. It is mostly common sense. Also beware of the “my way or the highway” therapists. Again, ask for a track record and ask to see their results.
Additionally, you must be willing to try numerous techniques, if needed, to find the ones that work for your child. You might find yourself creating a few of your own along the way and by all means, please share them. We are looking for results. Your own “off the wall” or “out of the box” ideas may work for many more kids. Please remember, to some extent, we are in uncharted territory and it is a combination of the hard work of all of us that will help researchers, parents, teachers, caregivers and all members of these kids’ teams to structure the stepping stones of the future of autism. We are in this equally regardless of where we are in our journeys.
Another extremely important component is the awareness of everyone. If the autism rate was 1 in 10,000 in the 1980’s and is 1 in 58 or less today, then even those who do not have a person with autism to immediately care for will certainly have one in school, the workplace, a relationship or in the community. It is already a part of our daily culture and societal infrastructure and must be recognized and understood as such.
This is a pandemic. If any strain of Influenza or disease were this prevalent, we would be under martial law. However, we go day after day without hearing or reading a single word. Is this coincidental? Mine is not the worry to attend to such a huge question, but to serve my son and whatever I can do to assist those wanting to seek out and learn. I have my hands full at this.
A potential guide for you as you start your own research is to check the dates of what you are reading. That tip, like so many others, was given to me by our one and only therapist in the state I came from that was completely current and really knew her stuff. Additionally, anything or anyone touting a cure, but necessitating buying a book, DVD , or any other profitable instrument to get the “answers” should be looked upon with heavy skepticism…
Think about it, when has there ever really been a “cure” throughout history without the information on it being free? I assure you, if anyone really knew more than the people actually healing or that have helped guide their kids to a healing, we would know about it by now. Autism caregivers are very open about their techniques, knowledge and lives and the autism community has become a very “pay it forward” group.
Certainly, great books have been written, including everything by Temple Grandin . Temple has autism. Her life story was recently made into a movie by HBO and entitled Temple Grandin . Temple is now an accomplished author and speaker, has her PhD, teaches at Colorado State University and is an icon to be learned from, studied, admired and respected. She is our Miracle Worker. Temple’s HBO story, for those who have not yet seen it, went up for sale this past August 16th and it is strongly advised you watch it to understand the concept of “thinking in pictures,” which is also the name of one of her books. You will also learn much about the “silver lining” (as my son’s diagnosing pediatric neurologist referred to it as) behind OCD (Obsessive Compulsive Disorder), a co-diagnosis usually found with not only with autism, but with most Spectrum Disorders. Temple Grandin shows us the innate fears, the rifling visual memory recalls, the brilliance and the hope we are now facing. You can hardly watch this poignant story and state that autism cannot be cured.
Another special caution should also be given towards self-proclaimed autism therapists, autism specialists and other fancy abbreviated medical labels. A quick search for any degree as an autism specialist will not bring results, not even in a vocational, non-accredited online course. Also, there are no DAN degrees – except in Martial Arts! A degree in ABA (Applied behavior Analysis), PT (Physical Therapy), OT (Occupational Therapy), ST (Speech Therapy) and SLP (Speech and Language Pathology) can be combined with autism-specific courses. A pediatric neurologist with extensive training in autism-related teachings IS the authority. It must be added, since autism is best treated by a PhD, Board Certified ABA (Applied Behavior Analyst), a lot of merit should be given to these professionals’ treatments and techniques.
Be prepared to encounter wannabe, self proclaimed money grabbers and don’t be afraid to interview these people and question them as much as possible. Again, ask to see results. Ask about their most recent studies and check into their alleged accreditations.
The current pandemic of autism has brought out the very best and the very worst in our society. There is more misinformation and misdirection in the cause and treatment of autism than with any other disorder in history. The billion dollar industry of bad books, worthless DVDs and “autism specialists” are overwhelming. This greed machine has found us with our hearts and wallets open, begging to help our loved ones and they are there for the taking. Reviews and testimonials can be faked and they sure do a great job at that. I will be offering my research, findings and experiences with the jungle of media help and guides out there. You may be shocked at the results.
Please remember, it is a hard work, common sense approach that is needed. Like reaching out to a foreigner who is from a place deep within their own minds and who doesn’t have the skills to communicate, you must have patience and compassion.
Trust is the bridge. Love is the incentive. Knowledge is the tool. You can do it. You may never be an autism expert, but you will certainly be your child’s expert in a short period of time. You should no longer limit what or how your child will learn nor should you limit how tremendous you will be in this task. It will shortly go from frustration to sensational witnessing of moment-to-moment miracles. Never in your life will anything represent the amazing road ahead and the gratification of knowing you have changed a life for the better.
Is autism a lifetime disability? By law the answer is: YES. Will your child need to be institutionalized? The answer should be NO and that is in great part up to you. The aggressions associated with most spectrum disorders will be reduced with correct therapies, especially in the area of communications. Emotions will need to be taught. Senses will need to be defined, enhanced or respected because of over-enhancement.
Will your child need assisted living? Protected living is a better definition and that’s where sibling, family and societal awareness are critical. Remember, you have just encountered the most honest, trusting and innocent human being you will ever meet. This is yet another gift of autism. I am so excited to have a voice to reach out to so many. Answers that were or are buried under “autism cure” DVD sets and complete media misinformation will finally be made clear. There is so much to report and so much to learn and we are all in this together.
History is being rewritten, autism is here. Spectrum disorders of all kinds are everywhere and in our workplaces, communities, institutions (including prisons) and our entire planet is full of people with autism, both diagnosed and otherwise. Did autism suddenly jump up or did we finally start screening, recognizing and diagnosing? The answer is overwhelmingly, both!
The first things to keep in mind AD (After Diagnosis) is NO BLAME, NO GUILT and NO FEAR. Many answers are available and many more are forthcoming. You are not alone. From the initial what do I do?, to caring for the caregivers, your hand will be held and as ours needs holding too.
Your life has just been changed forever. You will need to rearrange your dreams, your path, your career, your friends, your family, your relationships, your thinking and even your furniture. You might even be like me and rearrange your address – 3,000 miles away to another state. Whatever the price, please pay it.
The KEY to Autism is you. You will find that learning through play is possible and actually fun. The future of this miraculous, innocent and special human being is in your hands and you can do this. You will need to meet this person halfway at times and all the way other times. You will, in a sense, need to be autistic yourself to see through their eyes and understand their world.
One thing is for certain, this is the most remarkable journey you could have ever embarked on and you won’t have any regrets if you’ll just try. Remember, your children will get out of this what you put into it.
Again, as Mary Poppins says, “a spoonful of sugar helps the medicine go down.” Get out your chalk and be prepared to draw fantastic pictures to jump in, because she is right.
Welcome to autism.