Thursday, July 23, 2009

Determined To Make A Difference

Learning and teaching about autism is my passion! There are very few things I can do that bring me as much satisfaction. The more I learn about this topic, the more I am driven to seek out additional information to fill in the multitude of deficiencies I know I have in my knowledge bank. It's a never ending saga! The more I learn, the more I realize I don't know anything, and just when I'm excited about some new skill I've acquired, it changes. UGH!! For someone with OCD, like me, this is a rather frustrating cycle! Yet I'm determined to make a difference in the field of autism spectrum disorders (ASD's), especially in Asperger's Syndrome (AS), as it seems to be more complicated and misunderstood that the rest.

I have spent a great deal of time reading about and researching ASD's, but what I have started becoming much better at is listening. A very difficult skill for me, yet an incredibly necessary one that I am determined to conquer! Listening to parents, teachers, doctors, therapists, and the individuals themselves with autism spectrum disorder's. I have always said for years that I don't think like others do. I have always been very "off" in the way I looked at things, but I am now finding this to my advantage when it comes to helping those with ASD's. What I have always thought was common sense, doesn't necessarily seem to be common sense to others. Apparently, I have a rather different view of many things, that seems quite second nature to me, but arriving at those same conclusions isn't always such a snap for everyone!

I've decided to test some of my thoughts and theories, and interestingly enough, they seem to be working quite well! No, I don't have the Ph.D. or M.D. behind my name and I don't have the clout of being a well respected, published author on the subject at hand, at least not yet anyway! What I do have though are many of the very same issues we are trying desperately to treat in these kids. I was misdiagnosed as Bi-Polar in my teens with a later diagnosis of ADHD to accompany that. After years of psychotropic medications that not only didn't usually work, but often made me worse, I had to wonder about the accuracy of the diagnosis. Interestingly enough, my young daughter was diagnosed with exactly the same thing, and placed on medications at seven-years-old, before I knew any better! Shortly afterwards, my son was diagnosed with full-blown, nonverbal autism and our lives were never the same.

After doing quite a bit of research to help my son, and realizing this was much more than just a behavioral disorder, a parent asked me to help her child with Asperger's Syndrome. I had no idea what that was, but she told me it was an ASD, so I was intrigued and decided to do a little digging. The more I researched, the more I began to realize that my daughter and I did NOT have Bi-Polar, rather we had a co morbid condition of Asperger's Syndrome and ADHD. Now this made sense! The more I read, the more I was absolutely convinced of this and when I finally approached my psychiatrist about the question at hand, he fully agreed. WOW! For the first time in our lives, we were actually beginning to understand WHY we a bit different and recognizing that was OK!

Looking back over the span of my life up until this time, so many things that had never made sense before, made absolute sense now. The sensory issues, impulsivity, suicidal fixation, anxiety, depression, OCD, paranoia, I lied constantly, hated confrontation, was over articulate but had great difficulty finding my words when in stressful situations, had low muscle tone, poor coordination, was extremely literal, had racing thoughts, obsession with how others perceived me, and difficulty processing information unless it was presented in a visual AND auditory fashion, not easily picking up on things the way others seemed to, and much more. I had difficulty keeping jobs. I was the annoying person who had to know everything about whatever it was I was doing, so I constantly asked questions about details that most didn't even notice. I had to be the best at what I did, was bossy, didn't always understand what should have been easy instructions, I always thought I had a better way of doing things, and of course, rules applied to everyone, but not me! I was special! UGH! These were just the tip of the iceberg, but very clear and present symptoms that most would not necessarily see, unless they were around for extended periods of time and knew me very well, as I was a great pretender and could hold it together for fairly reasonable periods of time, only to fall apart once I got into my safe environment. I looked good to the average passer by, but never made it through school, couldn't maintain relationships, changed jobs as often as I changed my underwear, was perfectionistic to a fault, and had self esteem that was in the toilet and continuing to go down rapidly! I was a mess.

Having children desperately in need of my help forced me to make some decisions that were WAY outside of my comfort zone, and in the process of helping them, I was helping myself unaware! I continues to amaze me when I consider what we are able to accomplish when the lives of our kids are at stake. The rules all change and what was once unthought of, had to be scaled and conquered. It was just not optional. As I became healthier, I began to notice things in the lives of others with ASD's that I realized I used to do, but no longer did. This is when learning to listen became a skill I knew I had to acquire! It's kind of interesting, as I never noticed any of these issues while I was in the midst of the throws of AS and ADHD, but now that I seemed to be on the other side of some of this, it stood out like a sore thumb. I found myself constantly saying, "Oh wow, I used to do that." I never realized what it looked like from the other side and that it was so obviously dysfunctional. I had always thought I had everyone fooled. NOT!

As I started working with more and more individuals with AS, I realized I was seeing things in a perspective most other professionals were not catching. Many of these higher functioning individuals with AS could TOTALLY SNOW the psychiatrists and psychologists, yet they couldn't get things past my radar. You know the old saying, "You can't BS a BSer!" and that's where I found myself a large percentage of the time when dealing with AS issues. The kids and adults I was working with loved me and hated me! They loved me and often told me I was the first and only person who ever truly understood them. I began to realize even some of the best counselors and psych's just didn't think like we did, and now matter how much they "understood" about AS, they would truly never understand why we did some of the things we did, as they didn't live it everyday. For that matter, most of the parents who lived in that environment 24/7 still couldn't understand how we ticked. They were befriended for the first time by someone who truly understood why they did what they did and what drove those behaviors. In the same breath, they hated the accountability I held them to, as they could no longer snow the counselor! What they could normally pull off in the form of excuses or quasi-logical reasoning didn't fly with me for one second, and I called them on it every time. Hence the love/hate relationship. Funny though, they kept coming back for more!

Then there were the outsiders, who looked at me now and said there was no possible way I was ever AS! We all have these symptoms at one time or another, they would say. YES, that is correct, but the difference is in intensity and frequency, and do they interfere with your ability to live a productive and independent life? They obviously were not familiar with my childhood, teen, and early adult years, that I would not wish on my worst enemy! Yet I suppose it is hard to understand this kind of progress from the outside looking in, as it really is quite uncommon. I was way too high functioning and my articulation was outstanding, which was rare even for someone with AS who had recovered. Now, why in the world I would want to claim that diagnosis if I didn't have to is beyond me, but I decided to ignore the naysayers and keep moving forward, as I began to impact so many lives that mainstream medical and psychiatric had never seemed to be able to touch. I'm so glad I did! My fight with AS became doing everything I could to insure NO ONE would ever have to live through what I had in my earlier years. Not if I had anything to say or do about it anyway!

Call me crazy, and believe me you won't be the first, but I can honestly say I truly believe God allowed me to experience so much of what I did in my early life, so I could get well and help others experiencing the same things find health for themselves. It's been an incredibly difficult journey for me on the road to health, but the things I have learned along the way have molded me into a completely different being. Thank goodness! It's a passion for me, as I said earlier. Now I want to help others with AS set out on this journey to health. I realize now there are very few who have the patience, understanding and ability to teach those with AS in an effective manner, and let's face it, it's all about outcomes, isn't it? All the greatest teaching in the world doesn't amount to a hill of beans if it can't be effectively implemented by those who are being taught!

What I hope to do over the next few posts is start to explore the AS mindset and some of the issues that commonly drive us, whether for better or worse! It's not personal and our issues and behaviors are not our purposeful attempts at driving anyone to the edge of a cliff, contrary to popular belief! ASD's are medical conditions that cause neurological problems that result in behavioral outcomes. Understanding these disorders in perspective, from the medical, neurological, behavioral, and emotional standpoints in absolutely critical. It requires a global view, that often goes unseen. Pieces of dysfunction and individual characteristics or symptoms are often noted, yet who is drawing all these things together to look at the global view? It's something we have to start looking at if we are to make progress with individuals who have AS. My hope is that I can let you inside my brain, though a scary prospect, to see things the way we perceive things. Perhaps if you better understand how we think and why we respond the way we do to stimuli, it will help you to change the way you respond, or even better, have you proactively engaging these issues so that you don't have to respond! Prevention is the name of the game in ASD's, and if you understand how we process and think, you can be a few steps ahead of us to help avert what could otherwise be a major problem. And while we are calm, cool and collected, rather than raging, you can learn to appropriately teach us the skills to be successful in future environments we could not navigate before. Prevention, preparation, appropriate training and implementation of those learned skills are how we learn best. I hope in the coming posts, as we start to investigate specific issues, you will see that and understand the why's, so we can move on to the place we need to be to start learning how to overcome AS! I'm looking forward to it!

Laura :)

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Wednesday, July 15, 2009

Well On Her Way To Healthy

This is a blog post from Heather Liston, one of our patients at the Autism Solution Center. Her daughter, Tatum, is WELL ON HER WAY TO HEALTHY, has made remarkable progress and she wanted to share her story as an encouragement to others who are struggling along in this journey to recovery with autism.

I meet so many families each and every week who are just beginning to navigate this incredibly difficult journey, and can only sigh in exasperation when they consider the work ahead of them. Hopefully, this will serve as an encouragement, showing once again that with the right interventions and assistance, AUTISM IS TREATABLE and incredible progress is not only possible, but often attained!

Good Friday 2009

I just put Tatum, my 8 year old daughter to bed. I'm sad to see her drift off to sleep. This is quite a change from 6 months ago when I would drop into bed exhausted, only to spend most of the night pseudo-sleeping but mostly watching the video monitor (purchased from a local baby store) that was attached to the camera in Tatum's room.

It has been an especially Good Friday this year and not for just the religious reasons. I'm getting to know my daughter Tatum in whole new ways. It's an amazing journey filled with simple, everyday moments.

Tatum is autistic. She is highly intelligent. She is near constant motion. Like others on the spectrum, she came with very little need for sleep. I have had an interesting journey as an adult. Nothing has been as challenging as being Tatum's mother.

I made the decision to homeschool Tatum for the 2008-2009 school year. I saw the intense agitation and anxiety melt away, but every day life was still challenging and full of melt-downs.

In November I pursued biomedical treatment for Tatum through the local Autism Solution Center. Blood draws, allergy testing, colon cleansing, stool samples, and major dietary changes have become part of our journey. What I have learned is that there is a reason that Tatum has a hard time making it through any given day-her body is not working well. A lot of stuff is out of sync. But we have a plan now. I have hope that our life will not be tied to neurology visits, EEGs, and increasing amounts of medications.

January 1, 2009, we started the major dietary changes and supplements. I saw my daughter's food cravings disappear (she was the typcial GFCF kid looking for her next fix...shoving fistfuls of shredded cheese in her mouth faster than I could get the refrigerator door shut). She began to eat a wider variety of foods, including meat and veggies. She still misses pizza, but she has an amazingly sweet disposition about all of this change.

This past week, I have seen dramatic changes in her fine motor skills. I have also watched my daughter climb, run, and navigate a playground with no fear or anxiety (a major feat for a kiddo with sensory integration issues-in the above picture, she and Kelly are walking across a broken bridge-this previously would have led to such a high level of anxiety that our hike would have been over, but now it's hardly noticed by her). Her hair texture is changing. Her body is relaxing-she isn't walking around in fight or flight mode anymore.

Sitting at dinner last night with a good friend, I searched for the words to describe a recent outing to my older daughter's drama performance. My friend found the perfect word to describe it: "normal." This incredible experience was made so extraordinary by being completely ordinary...parents all around me were experiencing the same thing, but I was probably the only one celebrating it.

Tatum did not argue with leaving home to attend the performance. We talked in the car on the way to the performance. She did not have any difficulty sitting through the performance. She watched the play and laughed at appropriate times. When it was over, she clapped and ran off to find her sister. I collected both of them and climbed in our car and drove home. Once home, we re-engaged our day's activities without an issue. Normal. Just completely ordinary.

Throughout the whole drama performance, I never once was on high alert for things that might set Tatum off. I did not have to entertain her to try and keep her engaged. I did not have to find ways to work off all of her extra energy. I did not have to have a death grip on her hand in the parking lot to keep her safe. I was able to fully enjoy my daughter Kelly's play.

I am watching her tease and joke with me, her sister, and friends. I am seeing so many circles of communication between her and others that I'm amazed. She's seeking out hugs and touch. She likes to climb up in my lap (which is becoming more difficult as she is growing like a weed).

But it's deceptive. Having done the "normal" route with my easy going Kelly, Tatum's improvements almost sneak by me. Then I will realize how easy a transition was compared to the on the floor meltdowns. I'll observe Tatum upset that no one will play a game with her and remember the girl that only wanted to spend hours in her closet lining up her Little People or Magnetix pieces.

So our bedtime is simple. She has a bath. She puts on her pajamas. She brushes her teeth. She fills her cup of water. We read a story together. I tuck her in. Hugs and kisses. And then she drifts off to sleep. The video monitor has been put up on a shelf. I sleep.

Nothing unique about it. In Tatum's short life, we should have had nearly 3,000 of the same, ordinary bedtimes. We're up to 30, and I'm loving every minute of our normal life.

Heather Liston
(Better known as “Tatum’s Mom”)

Monday, July 6, 2009

Autism's Financial Frustrations

Bar chart of the number (per 1,000 U.S. reside...Image via Wikipedia

I spent a good amount of time this morning talking to a parent who is beyond stressed with autism's financial frustrations. She has 5 children, 3 of whom have non-verbal autism. I can't even begin to imagine what she goes through on a given day, as most families I know dealing with one child on the spectrum are overwhelmed, financially and otherwise! As we talked, it became more and more clear to me that there is going to have to be some different kind of major grass roots movement to change this myopic autism culture we live in.

This parent is EXHAUSTED! Not that most are not, but she is the perfect example of what is happening to families struggling with autism, who just fall through the cracks because of the lack of funding available to cover the interventions her children so desperately need.

She started out with biomedical and dietary intervention with all 3 of her children. The progress they have made in a very short time has been remarkable, yet they still have a long way to go. She pooled funds, begged family and friends to help, participated in fundraising drives, all in an effort to access funds to help her children, yet with the economy in the toilet, it just has not quite been enough to meet those ongoing monthly needs. Here's where it gets difficult. Now, she is more determined than ever to insure her children have access to the very things that she sees are effectively reaching them, yet the funding is not there to consistently continue those protocols.

As a parent, this has to be one of the most frustrating things to live through. Knowing what to do to help your child get better, seeing those very things available and within reach, yet having those doors slammed shut in your face because you are not wealthy enough to access them. My God, what is wrong with this picture?

Insurance is typically not covering the necessary testing to identify the underlying etiological issues, that once treated, often yield incredible improvements and/or recovery. Insurance is also not usually covering the visits to the medical doctors who are treating these children, or the necessary, daily supplements and treatments, even when scientific testing shows the deficiencies and medical needs for such.

So just like the elderly who find themselves in the quandary of trying to determine whether to eat or afford their necessary medications, families dealing with autism also wrestle with like decisions. Often, those decisions are the hinge that dictates whether or not these children will live an independent life and be contributors to our economy, or will be required to live long-term in the care of others at an enormous, yet unnecessary, expense of $4+ million per individual over their life span. Guess who will be paying that bill? Not to mention the quality of life issues that hangs in the balance as well.

I can't help but question at what point our society will cry out and demand something different be done about this epidemic issue that is quite frankly about to bite our economy in the butt in a way never seen before. Yet there remains only a rising rumble, that's all too often hushed at the hands of the mighty green dollar and the profit potential forecasted.

I have personally spoken to State and US Representatives who have flat out told me they 100% agree with everything we are saying about the current autism dilemma, the need for legislative mandates, autism insurance reform, changes in the school system tactics, accessibility to appropriate interventions, biomedical research, and more. Yet the cry is met with responses such as, "Although I understand the weight of the situation, I'm up for re-election this term and there are other issues I have to address if I am to get re-elected."

Myopic was the word I used earlier, and oh how appropriate that word is! We are currently trading in the lives of a significant generation of children who desperately need help, and can often recover when that help is available, in order to save face with the very constituents who don't currently realize they will be paying heavily in the long run for these faulty decision.

Someone please do the math here and spread the word throughout our communities! 1 in 150 individuals being diagnosed with full blown autism. THIS IS CRAZY! Yes, a few hundred thousand per child will have to be spent on the front end for some children to help them become indistinguishable from their peers, but in comparison to $4+ million per individual which WILL have to be spent, Hmmmm... wonder which way we should go? Make no mistake, this WILL bankrupt our economy if something is not changed, and soon!

Yes, I know I sound a little angry, but quite honestly I am! If this were any other disorder other than the politically charged, red-headed step child autism, we would not even be having this conversation.

Wake up America! The principle of sowing and reaping lives strong. The harvesters in this country (Yep - that's us, the average American citizens!) are being lulled into a sound slumber. Only we won't know the full consequences of our sleep, until we awaken hungry with the realization we forgot to sow our crops and there is no food.

I can only hope and pray that something changes, and soon, for these children who are brilliant beyond imagination and should be full of hope. I for one am committed to joining forces with anyone who wants to help get this grass roots movement off the ground and running at an unstoppable, full speed. Though it's been started many times before, the efforts often fizzle with the splintering of our autism community. Come on gang, we agree on much more than we disagree, and after all, it's not about us and our beliefs, it's about the kids! Right?

Who's on board?

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