A study that will never happen.

                The blasted vaccine debate has risen again this morning and the arguments that follow are all over the map. Studies this studies that followed by the words assumption, fact, proven, saves lives, be careful, fear propaganda, and inconclusive. Possibly why it took me so dang long to accept and admit I watched the regression of my child happen right before my eyes. Those crazy vaccine haters and all of their lack of correct information and conspiracy theories is what many people think. It honestly makes a parent want to keep an opinion to themselves if they know it played in role in autism for their child. No one wants to be looked at as crazy or ignorant on top of managing autism and keeping a family functioning on a daily basis. You don’t want a finger pointed at you for saying a large dose of vaccines stole the light from your child’s eyes but it has happened, to so many people I don’t even understand why the argument still goes on.

                I stay out of these arguments simply because I am not for or against vaccines. I am not against them because diseases that kill or harm children need to combated but I am not for because there is no procedure to test a child’s body for safety before they are administered. Before is the key word there because it is my belief the conflict is in the structure of the body not the actual vaccine created to protect us. I have read hundreds of studies like most autism parents until my eyes can’t read one more word. My brain can’t take one more dose of information, no pun intended. I can’t stand one more argument of parents attacking each other with the words in the first paragraph and if I see the word debunked one more time it might take a vaccine for insanity to bring me back from the land of confusion so many of us are wandering around in. The word study has taken on a whole new meaning for me entirely. Out of 50 studies I read I am lucky to come across 2 that seem to hold some real information that helps the cause one way or another. My faith in the word study alone has drastically diminished over time in regard to the science of autism. I am no educated scientist but often I read an article and I can’t figure out if an educated scientist actually conducted the study in the first place.

                Here is the study I am waiting for and it is not based on 100 kids from 1991 or a phone call made to people’s homes with questions about autism. It goes something like this; it starts with a phone call to thousands of homes by doctors all over the country. It’s a phone call to notify thousands of families a study is being conducted on autism beginning today vaccinated or not. It gives people the option to have genetic testing done to rule in or rule out any other differences that may have conflicted with vaccines or any other environmental conflict. It is now going to be part of the autism program for those who would like to participate because 1 in 88 or 1 in 50 need answers to the constant debates that tear the cause apart. The person on the phone will say “we have the science to begin this study because we have a giant list of possibilities, and what we need is current testing on the structure of how the autistic immune system works. We are going to check for toxic levels of whatever might be affecting your child, if any because we have the science to do it. If you would like to participate please make an appointment now, today with thousands of other families.”

                This will never happen and there are a couple of reasons why, number one it would cost millions of not billions of dollars to do. Number two it would answer to many questions and end too many debates with current scientific information that would make a whole lot of people very very mad. What would happen if this was done and it was discovered people have been affected by autism because of human error? How would they tell people that without providing lifelong care or compensation? How would they say to someone, “we missed something in your child’s body that is different and if we had tested for this early on, things may have been different for your child.” They can’t do this because no matter what, someone would have to be held accountable and no one on earth would ever be willing to take that kind of accountability.

                Next time this debate rises in front of you no matter what side of the debate you may be on, try to keep in mind studies show has become a statement with no backbone. If someone says my child was born with autism then they were. If they say my child faded after a big dose of vaccines then they did. Until we all get that phone call with the option to find out, which I can imagine would still give all of us different answers be kind and care about each struggle. Give support to each other and respect different opinions because that is a difference we all need to instill in ourselves for each other.

1 in 50 causing some debate

               http://bigstory.ap.org/article/health-officials-1-50-school-kids-have-autism

               This is an article that started to surface yesterday or one of them but all the same basic information. I watched it travel around the autism community on facebook and read the comments that came up in regard to the information. I didn’t comment just read because I knew this was going to stir up a tornado of opinions and it didn’t let me down. The feeling in regard to this article are very mixed with some people considering it fear propaganda, some saying it’s no surprise, some felt it lacked information and it does. Some felt it was very important in regard to awareness and others felt it would be harmful to the cause.

                Here is what I felt for what it’s worth. Autism is beyond a doubt on the rise all over the world in my opinion for two reasons. Doctors are diagnosing more and more kids are being affected. Not one or the other but both. Girls with autism are being overlooked because the affect is a bit different than boys. Similar to ADD and ADHD because with that many girls don’t have the hyperactivity that boys do so often it’s overlooked also. There are so many different degrees of autism from severe to mild each and every diagnosis is a difficult one. It is not simply mapped out and clarified so easily to a parent or a physician. You might have a 3 year old like my son who isn’t talking and then again you might have a 3 year with aspergers who speaks fluently.

                No matter how much fact there is to this article its important because the CDC will take it and it will be used to grant more funds towards care, at least that’s the idea we hope. Once a parent has an autism in diagnosis in hand, the funds to move forward with the right therapies is detrimental. That isn’t always available to people and some insurance companies won’t even touch it. The sad truth is the more the prevalence the more funding, research, and education will be made available in the long run. Kind of a scary truth but that is how our government works.

                If there is fact to this article at all we need to view it as important and take is seriously because even kids who don’t seem to highly affected will struggle in school and with peers. I have met some adults on this journey who didn’t receive a diagnosis until much later in life and struggled for a very long time to understand people and the difference they had. Once they finally discovered they had a difference they had to find a way to understand that to.

                If we blow this article off as completely untrue than we risk the possibility of blowing off kids who need the help. Blowing off the opportunity of more funding being granted towards a cause people are literally selling items to seek help. We are just a number to the CDC, health care system, and government. Our children and the adults are literally a statistic and that’s it. There is no care or empathy involved towards any of us so unfortunately that number is very important in the big picture. Funding for Autism is at the bottom of the list and we complain about it for good reason, so take that 1 in 50 no matter how you really feel about it. If you have been coping with autism for a very long time, just received a new diagnosis, or your child has had 7 meltdowns by noon and you are crying on the bathroom floor with autism on your mind it doesn’t matter to them. You’re either 1 in 88 or 1 in 50 on a piece of paper that passes by a desk with the slim chance of a signature that reads…help.

              

 

                 

Studies suggest...implies a possibility, not fact.

               Vaccines, that dirty word that causes people to erupt in anger. The moment it is thrown out there people flock to argue and my blog from yesterday begins. The feeling of no one listening sets in for some and words like ignorant, uneducated, and evidence get thrown around. Court is a word that comes into play because most people believe if a court claims it, then it must be true. If you have been in a court room you know you can’t put 100% reliability in a court decision. Doesn’t mean a court of law is wrong either, it’s just a risky way to always base an opinion. It simply means the evidence submitted suggests the outcome.

                If you read my babble you know that I believe vaccines affected my son but the debate is tiring and I try not to get involved in one. I do read them so I can see all of the theories people stand strong to.  You see when I read a long debate from autism parents about cause I tend to think every argument is correct. Meaning genetics, environmental, and the body’s inability to process vaccines. I think all of those argument are 100% correct but so many won’t listen to each other because they want the answer to be one or another.  What if it’s not one or the other? What if all of it is in fact connected and we are too hung up on picking one.

                A simple break down of what I am getting at would be, maybe my son has the genes for autism. Maybe environmental exposure, whatever it may be, caused his immune system to be different. What if the load of vaccines he was given was just too much for his system and I would include the newborn vaccine as well in that. I can only speak from what I see in our situation but all over the place we have kids with autism who aren’t vaccinated. Yes, unvaccinated autism or diagnosed before vaccines were given does really exist which many people don’t understand. Or families who clearly have a strong genetic link to autism and any vaccine info becomes irrelevant, but you will still find people who push it on those families regardless. How frustrating for them by the way! Can’t even possibly apply to them and they still get it thrown in their direction, typically with the word ignorant attached.

                When someone tells me what they think led to autism in their child, no matter what the theory may be I believe them no matter how different the theory is. When someone demands proof to a theory it baffles me because there is no solid proof to any theory. However if we dig long enough we could put interesting information to all of it. We can find suggestive studies that apply to every cause we hear about. If someone wants to find a study in relation to what they believe, the will find it just as easily as they will find a study to disprove it.

                Studies suggest are words used to imply a possibility not fact or 100% proof no matter what the subject is. When the words ignorant or uneducated get thrown around I think some ways we are all on that ride together because studies suggest no one knows the cause of autism. We can only apply what we know from our own experience and each experience is different. People need to respect each experience and at least listen with care.

               

When my son is sick the challenges are just a bit different.

                What is it like to have a sick three year old with autism? Well it’s a whole new ball game as far as parenting goes. Phillip is a pretty healthy boy and this morning he woke up tossing his cookies. First challenge is not that his stomach is upset because he is my third child; I am almost desensitized to body fluid. First challenge is he is terrified of tossing his cookies so he tilts his head back and wants me to hold him. My only goal is to prevent him from choking and the rest is aftermath that can be cleaned up.

                Now that I possibly made you want to toss your cookies, we move on to the second challenge. Lack of communication and this is the trickiest part of the process. Even at 3.5 years old he cannot tell me what hurts, how he feels, if he has a headache, if he is tired, hungry, or thirsty. All of those things you could typically ask and get some kind of response to but not in this case, I have to guess. To be honest sometimes I have no idea and sometimes I can read his body language. If he has a fever I assume he is cold but he doesn’t like to be covered with blankets or wear clothes. Some time in a warm bath has worked in the past to bring that fever down for a bit, but a temporary fix. I will offer him food or a drink but many times he is so frustrated with how he feels just trying to help him in any certain way makes things worse. If I see him look up and squint I can assume headache and if he hunches over I can assume stomach ache. Small clues that help me decide what I can do for him.  I do whatever and anything I can with persistence until we find that one thing that gives him some ease. The only way I know we found that one way is he will want me to hold him and that is the moment I breathe a sigh of relief no matter how long it lasts.

                The third challenge is what I call the zero to sixty effect because he will go from totally healthy to the E.R. within 24 hours. His tolerance level is high so he is able to push on until his little body just simply can’t push. This happened with his antibiotic reaction and it was frightening. One day he was fine and within 24 hours I couldn’t get him to stay awake. Once we arrived at the E.R. the series of questions they ask to determine the problem may not pertain to how he reacted. Meaning he was in fact allergic but the symptoms he had were not exactly what the files say should happen. Or you can’t even answer most of the questions because your child doesn’t talk in a way people think he should. Many questions hospitals ask are regard to how he responds but he doesn’t respond like many kids do, so I don’t always have the answer they are looking for or I answer based instinct and instinct isn’t always taken very seriously.

                The last and but least challenge is my very own mom instincts. For example today he cried but quickly his cry to turned into an ear piercing scream. Not typical for him at all the first thing that came into my mind was, what have I missed? Do I swoop him up and take him to the doctor immediately because in past that actually was necessary or do I wait, and that is a frightening feeling to wrestle with based on a sound your child makes or doesn’t in some cases.

                Sick and autism is in fact an entirely different experience and the one thing that is helpful is his ability to bounce back but during the commotion it is very difficult to manage. I have found prayer to be helpful;) but staying calm and looking for those body language clues have been key to being able to help him.  I also can’t say even with the body language clues I haven’t ended up sitting near him while he cries fighting my own tears. I have more than once, but I don’t think that is all that uncommon for any mom whose child is in distress. Some of us talk about and some of us don’t but we all know what helpless feels like to some degree as parents. I can’t write this on behalf of every child with autism but I can write this and feel pretty confident there are those who can relate. I also am not saying a child with autism who is sick compared to a non autistic child is harder because no parent would ever say a sick child is easy. Autism has just brought us some different challenges to tackle when the time comes and some of those challenges leave us on the bathroom floor crying with absolutely no shame involved. It’s necessary sometimes to clear the air and repower so to speak.

No Limits!

                The social stigma attached to autism always baffles me and let me explain just why that is. Yesterday we went to the mall and I wanted to let Phillip play in the kids area as long as it took to burn off the energy he had stored up from being home all the time. Play, get it out, have fun, and take all the time in the world to do it. The play area is a big circle with seats for parents and soft big toys to play on so he can’t really get hurt or get out easily. Not only does he get to play but I get to be basically worry free at the same time.

                I love to watch how he interacts and how he responds to the other kids. It’s not because he is learning how to be social but because I can say he is more in tune with social etiquette than most people would think. He loves other kids and is completely entertained watching them so he laughs at nearly everything. There was a lot of kids there and all within his age range so there was really no way to avoid being somewhat social. A couple of them were little wild men giving mom a hard time and some of them just doing what kids do. All of them were being good and kind to each other but even then kids do things we have to step in and correct them for. Some kids were grabbing and yanking other kids around or shoving, shoving is always a big issue with kids. Pushing, yelling, and touching each other comes naturally for the little ones.

                Phillip doesn’t touch other kids and any kind of touch is always instigated by others. He doesn’t pull or push on anyone and if it happens to him he carries on. We are told autistic kids don’t recognize the right social response to others and I know I can speak for my own son and other children as well when I say they do. There was a big wide slide that two children at a time can use and there was a pile up of kids using the slide. There were some little kids that could barely walk and the bigger ones who didn’t have a whole lot of patience to wait for the little ones to move. Phillip stood at the top and could see a little girl was at the bottom so he didn’t move. The kids coming up behind him were shoving and he stood his ground but eventually it was either find a safe way down or you’re going down by way of the child coming up behind. He slid down and stopped himself just at the bottom carefully placing his feet next to the little girl who was lying on the ground. He had to work a bit to avoid stepping on her and he was very successful at it. The next few kids came down and clobbered that little girl because she was in their way.

                Phillip continued to play for at least another hour and the entire time he was paying attention, close attention the other kids. He even knew which ones might be best to keep a distance from because the way they were interacting was a bit too much for him. No way was he going to give anyone the opportunity to grab his arm and drag him around or push him around. He just decided to carry on laughing and running with a safe distance from a few of the kids. Similar to what we do as adults, we keep a distance from people that are potentially a little too much.

                Phillips second speech therapist was a complete mess and when I spoke with the woman in charge she said to me “he did some things autistic kids don’t do.” I guess you could say that would be an encouraging statement but at the same time I don’t think that is ever a fair statement to make. If he does some things they say autistic kids don’t do and socially defies the stigma then autism isn’t what everyone believes it to be all the time.  Four therapists together diagnosed him and carefully diagnosed him so the statement “autistic kids don’t do that” should never be a statement we ever settle for. He is a little boy before he is an autistic little boy. He has a personality before he has autistic traits and I can’t think of one good reason anyone would set limits to what he can do. The common things we hear about autism are just that, things we hear and read, but children are not familiar with these limits. The endless paperwork that has been involved required us to give a strong yes or a strong no. If he did something that was questionable we had to pick one because an unclear answer that applied both ways was not acceptable. Limits and a direct no he doesn’t or yes he does was all that they would accept. I hated this part of the process because I couldn’t understand a direct yes or no when so much of the time nothing was that direct. At the time I felt like we were already being forced to set limits on his abilities and I just can’t wrap my mind around doing that to any child for any reason.  I don’t fill out paperwork the way I am told to anymore. If something is questionable I answer it in detail but I refuse to set any kind of limit on him.

                Before driving away from the bank yesterday Phillip let out a quiet little “thank you” to the teller. He has never done this and also has never said thank you, so saying it and at the right time was a pretty awesome moment. According the paperwork we filled out in Montana he would have had to do this more than once and while being told to. I would have heard something along the lines of, well one time and not when asked we should go with a no on that one. In other words that’s not good enough but let me tell you it’s beyond good enough when you hear it or see it happening. A boy they said may not understand seems to have the greatest understanding of all. That is he has no limits.

 

Gut flora is extremely important!

http://articles.mercola.com/sites/articles/archive/2011/09/24/one-of-the-most-important-steps-you-can-take-to-improve-your-health.aspx

http://www.culturelle.com/your_health/culturelle_for_kids

                Horribly common problem for kids with autism is bowel trouble. Or I could say bowel trouble caused problems for my son’s autism because it actually induced some pretty strong side effects. I have written about this before but I constantly see cries for help on this issue and I know exactly how hard it is to see your child struggle with this problem. I also know a lot of medical providers or other parents will give advice that is a quick fix and long term is what is needed.

                Our son had some pretty serious bowel problems for at least a year. I am not talking about discomfort, but problems that were debilitating for him. We had to actually plan life around his bowel system. Meaning if it wasn’t working we were not leaving the house until it did. It would literally take a week sometimes or longer for relief and what I noticed during that time was not only was our son going through hell but it had a strong effect on his mind. The only way I can describe it easily is the autism traits were intensified and the light in his eyes would go away. I also noticed it wasn’t a matter of him not wanting to, it was a matter of him not being able to.

                I did what everyone says not to, researching on the internet because sometimes you just have to. I was told more water, a laxative, suppository, and all of the things I was told could have been a quick fix but none of these things were addressing the problem.  I read a ton of articles and took a little bit of information from each one, especially when the immune system was mentioned. I already knew his immune system may have not moved the vaccines along so there had to be a connection to this problem, meaning his body was lacking what it needed to get the job done.

                I knew nothing about gut flora and how it affects the system and not just the bowel system but the mind as well. The link above is one of many parents should read who are facing the same problem but I chose this one because it’s easy to follow and understand. I also know this isn’t always the answer but for our son it was.

                I started giving our son one dose of kids Culterelle probiotic every day. I included the link for this product but there are a ton of options out there to choose from as well. This is just the one we found to work for our son.  Within 24 hours we saw relief and a long term difference. Without that discomfort his focus was better and he was making more progress. Constipation can have a toxic effect on a child’s body because it is just sitting in the body releasing toxins into the blood stream and I do believe that was affecting his mind. It was actually hindering him from being his best physically and mentally and it was not just because he was autistic like so many people would tell me. He is autistic and if that is neurological, than why was it so clear this was a physical struggle having a neurological effect? This was not his mind not understanding what to do; this was his body not being able to.

                Since the addition of a simple probiotic every day Phillip has been able to make progress without the physical set back that was grabbing a hold of his mind and body. A probiotic is a natural treatment by the way as I know many parents want a natural option. The only thing that is unnatural is the body isn’t able to produce enough good bacteria (Gut flora). That problem goes way beyond autism and is affecting a large amount of people. For now, I strongly encourage parents who are trapped at home for a week waiting for relief to get educated on gut flora and how important it is for the entire system. Personally I have no idea how we would have gotten past this problem if at all without learning about this connection.

 

Are doctors afraid of autism?

                Yesterday was a day of enlightenment for me as a mother and some disgust as well. Took my little man in to check his ears after the doctor gave me some advice to use drops for a while. I expected when we went in she would in fact be cleaning his ears out. An odd thing and I was a little worried she was doing more than necessary just because he has never had an issue with his ears. No one has ever mentioned anything in regard to his ears unless it’s asking if he can hear. It appeared he could hear just fine. In fact the health of his ears has been awesome because my older kids had constant problems with their ears when they were little and it was a nightmare.

                We pulled into the parking lot and Phillip went into meltdown because at this point he has an intense fear that has grown towards clinics.  A fear largely based on touch and the process of checking his vitals. After wrestling him into the lobby I took him into the bathroom as his screaming was a lot for the other people to take and the receptionists couldn’t use the phones he was so upset. He didn’t stop and for a moment I thought, maybe we should just leave and call the whole thing off. I couldn’t imagine a little ear wax was worth what I was putting him through but they called his name so we pushed on. The whole time I am wondering if any of it is needed in the first place. Sometimes you run into those doctors that just go a bit overboard and other times you run into the ones that don’t do enough.

                Finally Phillip calmed and his doctor said it was time to clean out the ears. I wanted to leave the room at this point but four people were needed to hold him down so I held his arms, one nurse held his legs, and another held his head. In the meantime I am fighting back my tears successfully by the way. When the doctor pulled out the problem all of us were blown away by the extreme blockage in the first ear. The next ear was no different and that is when all the doctors that I have encountered in the past year flashed through my mind and not in a positive way. I would have put an R rating on this blog if I told you exactly what was going through my mind.

                I asked his new doctor why on earth this has never been mentioned to me by any other care provider. It’s a problem I can’t see, he never expressed discomfort and I imagine because he was used to it. He probably felt that was the way the world was supposed to sound. The doctor eased my anger a bit by telling me things work out for a reason and she is actually pretty skilled at removing the problem so it may have been better she did it than a doctor who could have harmed him. Good point and she was right but that didn’t exactly take away my disgust. That would mean 1 in 5 doctors are skilled enough to remove ear wax…think about that. Scary thought isn’t it?

                I have a child who can’t speak clearly and he has made huge progress. I also have a child who I have been told needs hours of speech therapy so my question was how can doctors push this and not address a hearing issue? Of course he is autistic but how in the world is he supposed to reach the speech goals they put on him if he can’t hear the words properly?

                I don’t care if a doctor would have said to me, he has blockage in his ears but I am not sure I am the one to remove it, let’s send him to someone who can. The slightest mention is all we needed to help him. I spent the better part of the day making myself physically ill thinking about how long he may have been dealing with this. Thinking about how so many care providers knew he was challenged with his autism and let him walk away with a separate challenge of not hearing well. I thought about all the things doctors have avoided simply based on his autism and not wanting to deal with him because yes it takes 4 women to hold down a 28lb boy. How many things I have had to figure out on my own because medical providers don’t seem to know how or want to. He used to get constipated for weeks a time and each time I mentioned it, well it was just a part of autism they always said. Not so, but I can say that problem made his autism much more difficult to manage. No one helped me figure that out for him other than sleepless nights and reading a ton of information.

                So many people are just flying blind with autism and not just because it’s a mystery to parents but because it’s a mystery medically. People wonder why autism parents grow so frustrated with finding quality help and this is one very good example. We do now have someone who is not willing to just let us walk out of the door blind to an extra challenge that isn’t necessary, and thank God for that! That doesn’t mean she understands autism completely it just means she isn’t afraid to deal with it because his quality of life is the priority. Then again aren’t we supposed to feel that way about the majority of our medical care providers instead of the minority?

                When we left the clinic I turned on the music in the van to the classical Phillip likes and his eyebrows went up like he hadn’t heard it that way before, meaning clearly. He stopped in the backyard because some small birds were in the tree chirping. He stood and listened to them and gently touched his ear. The loud sounds he typically makes all day are gone as of the last 24 hours and I can whisper I love you and get his attention. He would have typically ignored all of these things and most people would have said it was because of his autism which he still has of course only now he has autism and a new level of hearing. One good doctor who saw his quality of life as priority was all it took.

               

If autism is a genetic mutation...how and why is that effecting so many people?

                I logged in this morning and looked for some new autism articles and I found the same old information that continues to repeat itself. Genetic mutations and another long list of possible triggers, which I feel like I have read a million times before. Then you have the articles about the safety of the vaccine schedule tossed in to add to the information piled up happening in your mind. That is when I decide even looking it up was a waste of time.

                Here is what is comes to mind each time I look up new autism articles. Ok, so we have genetic mutations but I have not read one time what may be causing such a drastic change in genetics across the world. Actually I don’t think I have even read a mention of why or how this is happening and that seems odd to me. People will say the diagnosis is easier now so the numbers have risen but if you take a good look at the numbers and how fast they have gone up that just doesn’t make sense. Twenty years ago autism was 1 in 10,000 and now we are at 1 in 54. A small amount of that could be related to more understanding but there is just no way that increase is simply because doctors are more aware of how to diagnose autism.

                Yesterday I drove by my kid’s school just before school was getting out. The Special needs buses line up first to pick up the kids and there were six buses in a school of around 600 kids. Six special needs buses? I don’t know about you but that seems like a very high number and no not all of those kids are autistic but regardless they are disabled in some form. I do not remember, and maybe my memory is distorted from being an unaware teenager, a special needs program being so large 20 years ago when I was in Junior high school. In fact I recall a very small number of disabled kids in my school. I can look around in society and see unhealthy people everywhere. Not just disabled but physically don’t look healthy. Lately I have noticed the elderly appear to be healthier then our younger generations. My 90 year old grandfather has a better glow than many of the young people I see and let me tell you his mind is healthier than the majority of the people in society as well.

                Yes I would say our genetics are changing, mutating, and whatever else science has claimed is happening but why are these genetics mutating? Why are families with no genetic history of autism or other disabilities having children or more than one child with a genetic disorder? If the odds of having a child with autism are 1 in 54 than the odds of me or dad having that genetic mutation as they call it seem to be incredibly high as well.

                Maybe I sat on my couch during pregnancy and the flame retardant that seeped into the air pulled the trigger. Maybe I got a fever during pregnancy and autism began. Maybe I got to close to the linoleum in my kitchen and autism hit. Or my favorite article of all time, Fat moms, a tasteless and clear view of how ignorant man can be in the title alone. We can put all of these causes and triggers that parents are blamed for in a pile that would be taller than Mount Kilimanjaro and still the science gods of our time cannot tell us why genetics are being altered….and element of the autism question is the one we should all be asking.

               

A nurse who understands autism, can make all the difference in the world!

               Have you ever taken your child to the doctor and encountered a nurse who has absolutely no understanding of autism? Of course you have. I love nurses and they a breed apart for even going into the field of nursing to begin with. I could never do it and I have a ton of respect for the people who chose to be a nurse. It’s hard work to the say the least and when you encounter a nurse that gets it, it makes all the difference in the world.

                When my son had his allergic reaction to an antibiotic I took him in to our local ER. I always tell them right away he has autism because I do think the typical routine may have to be modified from time to time. Checking vitals can be a horrible experience for child autism and especially a child who is already in distress. I have encountered nurses who just don’t get it at all and the goal is more important than any reaction to the process. The day I took Phillip in to the ER he was becoming lethargic, fever, and didn’t even want me touching him on and off. The nurse decided the best way to check his pulse was to go by of his big toe. It took both of us to keep him slightly still and his discomfort level was through the roof. After what seemed like forever and getting no results other than screaming another nurse walked in and took over.

                This nurse completely understood what was going on and simply ended the madness. When she stepped in it was like an angel walked in the room! She looked at my son and just flat out said…”It’s ok to move forward in this case, let’s get you to a room.” My relief was immediate and so was my sons. Touch is such a huge fear for him if he doesn’t know someone, forced touch anyway. The first nurse was really trying to do her job the right way but at the same time she didn’t understand the actions of my son were not from being sick, but from that fear of forced touch from a stranger. The second nurse took over that day and it was a horrible ER trip in general. He had to be checked for a bladder infection and it took some convincing on my part to not give him a shot of antibiotic before the check, which could have led to a much worse scenario. I stepped out of the room that day for the first time in 14 years of being a mother but that nurse was in there and her understanding of my son was the miracle of the day. To her this was not just an uncomfortable child with a stubborn streak. He was in her eyes a child with autism and she knew what that meant. These amazing people are much harder to find then you would think and they stand out in a powerful way.

                This was not our first ER trip and before Phillip was diagnosed we spent some time in the ER and I learned much later every nurse there that day felt he was autistic but it wasn’t on his charts so they broke the rules a bit and treated him as an autistic child. I was still in denial but thank God they could see what I didn’t want to at the time. If they hadn’t modified there plan of attack that day we wouldn’t have gotten through that trip as graceful as we did. Without a diagnosis the rules would have been he needed to go potty before we left, but they knew if he was autistic he wasn’t going to do that until he was in the comfort of home so they let us go and as soon as we got home he was back on track and I called to let them know. They all knew I would call to tell them that because they all knew he was autistic without it being on the paperwork.

                The first encounter in the doctor’s office sets the mood for the entire visit and we have had some encounters that have set a very bad mood. Leading to an intense fear that has not gone away but I tip my hat today to those nurses who get it and work with it. They are not just a nurse but for a child with autism they can be the angel that just walked in the room.

               

Worm therapy for autism?

http://www.foxnews.com/health/2013/01/21/study-looks-at-worm-therapy-to-treat-autism/

                Interesting article to check out above and although it seems a little scary, there are elements in this article that makes sense to me. Worm therapy freaks me out a bit but the mention of immune system abnormalities is one I am totally on board with. My son’s immune system has always been a question in my mind. Today I am going to tell you why in detail, a description I have avoided because I don’t like it to be direct but if I am going to make any point about the immune system it’s an important part of our story to share.

                Phillip had some sensory sensitivity as a baby. Quick and loud sounds would upset him and he was set in his ways. I breastfed him and he refused any form of bottle no matter how many I tried. He didn’t like to be held by anyone but his immediate family. That being said he was also advanced according to our medical charts. Each well check he passed with flying colors and he was beyond his age as far as progress. The only thing he fell short on was weight and it was a never a concern. He was talking, fine motor skills were awesome, and everything else was up to par. In fact dad and I would take him in and fill out the papers with a huge amount of pride in our above and beyond little man.

                Here is the part I believe we fell short on knowing his immune system was different. Before I go further I will tell you this is a day that will haunt me for the rest of my life. At 15 months I did not take Phillip in for his well check as he was perfectly healthy and I procrastinate. So I held off and eventually took him in around 19 months. I was told that day he was due for shots and I knew that because I gave him some Tylenol before we left. However I hadn’t had children in ten years and the vaccine schedule along with number had changed. I was told he needed a high number that day and I asked if that was ok to do. The answer was, “it’s better to get it all done today then to make him suffer again soon”.  I agreed to it.

                I will never forgive myself for that moment in his life, never. I am not against vaccines at all and I understand why they are important but what happened that day is not ok. He was given 6 shots all together and keep in mind he already has some sensory issues so high possibility he had an immune system difference we were not aware of. I did not understand what sensory differences were at the time and wish I had known back then what I know now.

                You see I took my son home that day and he slept most of the day, typical reaction for shot day. The problem is he faded and he didn’t come back. He stopped eye contact, he stopped laughing at silly things, getting his attention was impossible, and yes I can pin point it to that very day. A mother knows when her child is in distress even if it’s not an emergency situation. I watched him fade and just thinking about that day puts a squeeze in my chest. I don’t blame vaccines but I do blame the medical community for being careless when it is there job to protect and keep my child healthy. I am supposed to trust them and they are supposed to have more knowledge than I do. Only now do I know the vaccine schedule is only in place for people like me, who procrastinate. The CDC has not one medical explanation for the push, not one.

                Phillips next appointment was a couple of months later and this time he failed all of the tests for progress. Didn’t just fail he regressed back to 6 months old and this was the appointment the word autism came into play and I burst into tears in front of my doctor. Uncontrollable tears I could hardly talk through.

                In my sleepless nights of research and trying to put things together I understand my child was possibly born with the autism gene. I also believe the autism gene carries some immune system differences that don’t allow him to process as expected. That’s our story and it has taken me along time to accept it because I don’t like it. I even denied it for a very long time because it means I led him to it. You will even find in the beginning of my writing my denial in full force.

                Everyone has a different autism story and I respect each and every one of those stories because I do also believe autism comes into life in a different way for everyone. Some would say to me, vaccines don’t cause autism and I agree, they don’t, but the immune system certainly plays a role. The sooner those immune system differences are figured out, the sooner some challenges can be addressed or even avoided.

                I have also sat down a number of times to write this only to stop and keep it to myself because I know how people feel about the ugly vaccine debate and didn’t want to be perceived as an angry vaccination hater. The article above is interesting and a little scary but at the same time adding it released this story from being trapped in my mind. Trapped is exactly how my son’s autism was described to me the day he was diagnosed and if he is expected to bust out of the trap, then I need to follow his lead because he is doing a phenomenal job with his progress.

                If one person reads this and proceeds with caution, is able to address an immune system difference before it’s attacked or even just can relate to the story, then I have made a little progress of my own.

               

Even Science needs a little faith

http://www.huffingtonpost.com/david-kirby/post2468343_b_2468343.html

http://www.autismspeaks.org/science/science-news/researchers-identify-24-more-%E2%80%9Chigh-impact%E2%80%9D-autism-gene-changes

                Couple of articles that caught my eye this morning and one I have already shared on my Facebook page. I am just a stay home mom with a little mystery running around my house but that mystery keeps me thinking, even if I don’t have the energy to think for one more second.

                Just some food for thought today and not everyone agrees with each other when it comes to autism and we all know one case is never the same the same as the next. The vaccine debate is always there and lately seems to be gaining some strength but then we have the Autism Speaks article that clearly states DNA is being modified. It doesn’t state even a hint as to how DNA is being altered but could it be there is a connection in these articles?

                If DNA is changing and many things could be causing that, GMO comes to mind for me, which has been outlawed in many countries but our government is too invested in GMO to allow that here. DNA changes and apparently at an alarming speed, then other parts of the body are altered but we have no knowledge of it. Then we throw some vaccines in play and what we could end up with a body that is confused and fighting back and fighting things it doesn’t recognize. The immune system that is already altered goes into hyper drive and crashes.

                Vaccines can be declared safe because in a typical body that has not been affected by this DNA change or other organ differences the vaccines are safe.  The greater population is going to process things as expected but then you have that piece of the puzzle so to speak that does not react the same way. There is no question autism is on the rise and continues to be on the rise. Some say it’s a better understanding in the medical community but as a parent of autism and knowing the difference first hand, that doesn’t fly so much with me. If you live with autism you know it’s unmistakable.

                I think one day the connection between modified DNA, organ structure, and the way a vaccine is processed is all going to come to light. Of course it will take someone brave enough to study the connections, prove it, and challenge the powers that be. Until then school yourself on these elements that really do effect all of us in the long run if not right now.  When you are bombarded with autism cause, even if you don’t want to be, it soaks in and you want to know more. I have heard some of the most ridiculous things from people about autism and I was once even told two smart people are the genetic trigger. One that to this day makes me laugh but there is no doubt a science to autism that hasn’t been figure out yet.

                My son will get through life just fine and he will have challenges but I read so many stories of children who are not fine and their challenges are debilitating for families. We hear all the time that saying “until all the pieces fit” and maybe those pieces aren’t all in the same place. Science has the power to find them and put them together and I pray for that to happen one day because even science needs a little faith to find answers to a mystery.

               

We don't 100% know what's safe, but science can grow us an ear?

                That dang vaccine debate crept up on me this morning and if you have autism in your life this is a topic you can almost never avoid. I personally am on the fence of the debate watching people get mad at each other from both sides and the interesting part is both sides are right.

                On the one hand you have the vaccine this people with a big middle finger up and on the other hand you have the vaccine or die people with another middle finger up. Are either of them wrong for feeling the way they do? No, not at all. To many vaccines to fast could have a highly toxic effect on a complicated immune system and the CDC has stated they do this to simply make sure children get the vaccines. Then again not vaccinating realistically could carry the risk of potentially deadly disease, so either way there is risk.

                The problem is not necessarily to vaccinate or not to vaccinate. The problem is conflicting, lack of, or incorrect information. One day we hear mercury has been taken out of vaccines and a year or two later we discover that wasn’t exactly true. We turn on the news and the media has reported deaths from influenza or H1N1 so if you are pregnant you must go directly to the local clinic and get vaccinated or your unborn child could die. We do it because we are afraid but then we see reports of high mercury levels in that first round of vaccines. It’s fixed now but back then it slipped by the CDC…oops.

                I will never forget the day I went to the clinic to get my Swine flu vaccine. I was 7 months pregnant and some of you are actually already gasping at that sentence. I received a call from the county nurse telling me they received enough vaccines that day for the elderly and pregnant women, who we were told were highest risk. That we all know was a true statement. I hurried down and while I sitting in the lobby another woman was sitting across from me also 7 months pregnant. This women and I started chatting and she asked me if I was there to get my Swine flu vaccine. I said yes and she looked me dead in the eye and said to me…”You’re crazy, no way would I do that right now”

                I had no idea why she said it at the time but now boy do I understand her comment and then some. Now that my son is three and has autism, which has forced me to gain more knowledge then I ever knew I would have, would I tell a woman who is 7 months pregnant to go get a flu vaccine, Swine Flu vaccine, H1N1 vaccine, or take Tami flu? The answer is no I sure would not. I am not a medical professional and don’t know a whole lot but I do know the unknowns and open ends are frightening for a parent. I actually ended up with the flu anyway while pregnant right along with high fever and to boot gestational diabetes. All of which science has tried to point to in regard to autism. So I can’t say the vaccine did anything dangerous to my child because I don’t know.

                We need to fix these unknowns! We have science that can grow a human ear on the backside of a mouse but we can’t lock down answers we need. We can get online and find hundreds of articles saying a vaccine is dangerous and then we can find hundreds that say they are not. All of which seem to hold some truth but no firm clarity. Science can create a virus that hits our population like a freight train, Swine flu man made by the way, but can’t seem to treat it in a way we feel 100% confident in.

                The point to my blog today is no matter who holds what opinion always try to remember everyone holds a bit of wrong and everyone holds a bit of right. Hopefully someday science can give us that clarity we all need and until then we know we can always get an extra ear if we need it!

No labels for GMO? Are you kidding me?

              Well the election is over and last night was spent on the edge of my seat waiting like most of America. I was disappointed Obama was given four more years but another issue weighed on me like a 600lb man, literally

               Proposition 37, which was a bill in California the whole country should have been voting on to label GMO food and it was shot down. A label, just a little notification to Americans the food they are about to consume has unknown consequences. When I discovered this was voted against I was completely shocked as this was an American choice. I had to wonder if people know what GMO is. Or what I really wanted to now was why on earth people would not want to be informed. Are we so secure in out of site out of mind we actually don’t want to know?

                GMO’s have been in nearly everything we eat for ten years mostly unknown to the greater population but becoming more understood. This is what I know personally from my own life that makes me so passionate about the cause. I have two older kids both born before GMO was introduced to our systems. My older children do not have autism and yes they have received all of their vaccinations to date. During that ten years my thyroid stopped working which at one time I healed by adding algae to my diet. When I stopped my thyroid also stopped. GERD was introduced to me and I had to medicate to repair possible holes developing in my stomach lining. Then I discovered I was pre-diabetic and had to limit my sugar intake on top of avoiding acidic foods. Now we have Gastric Reflux, hypothyroidism, and pre-diabetes at 29 years old and 115lbs.

                During my pregnancy with Phillip I had to keep track of my pre-diabetes to make sure we did not go into full on diabetes. I was able to manage that without any kind of intervention from the doctor and then I have a healthy 7.7lb baby boy. I breast feed him like all three of my kids to give him the healthiest start in life I can. He cries a lot but not colic. He hates loud noises, being held by anyone but mom or dad, and seems to already take comfort in a system as an infant. He is vaccinated and at 16 months he begins to fade. At two I realize my son has autism and begin endless nights of research.

                If you are wondering if I am targeting vaccines I am not. Although if his system was compromised in a way we can’t see on the outside, yes I do believe vaccines would not have been allowed to flow through him properly. Around this time I am fighting allergies. A new fight I have never experienced in my life. Allergies at 33 years old and no doctor can pin point what I am allergic to. We ensure nothing in the house could be the cause. Get rid of a bird, bleach the hell out of everything, and I vacuum every day in case it’s the dog. Although I have been around dogs my whole life so I had doubts it was her at all. When you’re sick with no answer you will blame everything.

                Today I have an autistic child who just had an allergic reaction to the only antibiotic he has ever taken. He needs a probiotic to have a bowel system that works properly and an algae supplement seems to giving him some ease neurologically. I take an allergy pill every day of the year and I have no idea why. All I know is I can’t function if I don’t have relief from whatever allergy I have. All of these things pull my brain towards GMO. Only two countries do not require a label and that would be America and Canada. Some countries have demanded a label or have flat out said no to GMO without a vote by their citizens even required because common sense and consequences stepped in before a vote was ever needed.

                I have no understanding of why in the state of California, where the doors for same sex marriage were opened, a label to give us a choice was turned down. Are we so selfish in our out of site out of mind culture we are willing to gamble with our own lives and our children’s lives? We will legalize marijuana, we will fight for same sex marriage, we want free health care and we will hold on to a failing economy. We will complain about our health and the effects are right in front of us in society every day but we don’t want to know what is in our food? That is devastating insight into the priorities of way to many Americans. That alone will keep you from sleeping sound at night.

 

Hypersensitive immune system and autism and we are 3 today!

http://www.autismspeaks.org/science/science-news/study-finds-children-autism-have-more-active-adaptive-immune-system

http://www.cdc.gov/vaccines/pubs/vis/downloads/vis-multi.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2898160/

              Today is Phillips third birthday and we will be spending it trying to gain our strength back from two days of an antibiotic his little body didn’t like. I have learned so much in the past three years and even now I wake up every day with a new lesson coming my way.  I can’t avoid it, he won’t let me and I say that with gratitude and humor at the same time. We aren’t doing anything today but resting and waiting to have a party for him when dad comes home in a week. I can’t let the day go by with nothing so he does have some presents and the old inflatable birthday cake I have used for everyone for years is up and running in the living room.

                I was up last night until 3am researching things I hadn’t come across yet on this autism journey. It seems just when my mind is completely made up in regard to the difference something jumps up and tells me to read more, because I am missing something. I have always stuck very close to my genetic difference idea and even after hours of reading last night I still believe in the genetics of autism. Even when it comes to genetics we do know carrying a gene for something doesn’t always mean it’s going to be an active one. Then I begin to think about what pulled the trigger as you will hear so many scientists say. I haven’t been a huge fan of Autism Speaks because of all the money raised for research and very little being put into resource but being humbled is an important lesson in life we all need to embrace from time to time.

                My son’s immune system is exceptional and rarely is he affected by sickness or any physical problems that could be associated with autism. It has all been neurological to this point which convinced me this is just a genetic difference. This weekend when he was given his first antibiotic ever for a bladder infection he actually did not have I was paying attention. His reaction to the antibiotic was a difficult one from throwing up, fever, chills, swollen lips, swollen throat, and what appeared to be pain in his stomach. The reaction began on the morning of day three and he had taken only two days of this medicine. Why is it a child with an impeccable immune system would be affected so horribly? A foreign substance in his body that kicked his immune system into overdrive and overdrive is what causes the body to go to war with what it doesn’t recognize. A hypersensitive immune reaction and the first time I have witnessed this happen to him, I think.

                We focus so much on genetics and vaccines or at least the general public does, I am now leaning towards genetics and a hypersensitive immune system which also would involve how his body can or can’t process a vaccine. Not one certain vaccine like so many people blame, but all of them. The vaccine process begins at birth and during the first two years of life we are given a strict timeline to get them. For good reason and I would never say not to get vaccines because it is needed to a certain point. Here is where my mind has evolved to in the last couple of days and researching until three am last night. If a child carries the autism gene and is born with a hypersensitive immune system the process of his body going to war with foreign antibodies could begin from day one. Each time receiving a vaccine could certainly have an effect. This would not be vaccines causing autism; this would be autism losing a battle with the process of vaccines. Or for that matter any foreign substance the immune system goes into overdrive to get rid of. If the medical community could find a safe way to test an immune system from birth before giving anything that may kick it in to overdrive, could it possibly keep the safety on that autism trigger?

                Once again this journey has made me change direction in my thinking but not one way or the other, just a new road that seems to make the most sense to me. In fact I am surprised my children didn’t wake up to papers spread all over the house with crazy random facts written all over the walls this morning from my intense desire to learn more last night and having the evidence sleeping peacefully in bed. As much I enjoy being humbled, I really don’t like changing my mind unless I feel 99% confident in why. When it comes to autism 99% percent confidence is kind of a funny statement to me no matter how much I research.  One thing autism has taught me is that I will change my mind to many times to count and I have to be able to accept it.

                At this very moment I have an adorable birthday boy sitting next me with a sour look on his face. He has managed one piece of toast and three big swigs of water to begin what may turn into a birthday to remember. No matter how much I learn, change my mind, and research he still just needs his mama to tell him it’s all going to be ok. I don’t know about you but even I need that to this day in my adult life and the journey continues.

 

Deal with it...but explore all options first.

             For the past four days I have not been feeling my best and the part what was getting me down was the fact this happens every year like clockwork and sticks with me through the entire cold season. It’s infuriating to say the least and with three kids to keep up with I just can’t afford to go through this health battle all over again. Two years ago I ended up in two emergency rooms with no answers and in the end my dad and I figured out it had to be environmental. I began taking an allergy pill every day and that is year round. Shoved it off as a mold I was sensitive to and when you live where I do, there could be a number of them to blame.

Four days ago when I started feeling this way all over again and had to double my allergy pill intake, the thought of being ill for months all over again ripped apart my optimism that I pride myself so much on. Once that was weakened it seemed like every little thing was able to rush in and bring me down more. All of the stresses I have had that I have been able to keep at bay came flooding in and this little Miss Susie sunshine was walking around with a big black cloud over her head.

                At 2am I woke up with again a stuffy nose, swollen eyes, and complete frustration. I also had to go load the fireplace so the morning cold wouldn’t get us and it hit me. After 4 years of struggling through the winter feeling like death my wood stove gave me a big evil grin. It has to be the wood stove. Not the wood stove itself but the wood and process of burning it. The tree pollen and the molds that grow in it are in my arms every day and I am burning it, so it’s coming back into the home every time I open that dang stove up. I experience the allergy all year but it is at its worst beginning four days ago when I began to burn. Bottom line, I am allergic to trees. The irony in that being a girl who was born in raised in the northwest and now lives in a national forest is just amazing. Even more amazing is the time it has taken me to figure this out. Three doctors and two emergency rooms with no answers and all of sudden the answer hit me because the answer was sitting right in front of me the whole time. So that is that and it’s no longer a mystery and now I get to push through it once again. Totally unavoidable and nothing can be done to rid of this cold weather problem. Now that I have discovered the answer my attitude is nearly restored but it may take a couple of days to completely dig myself out of the misery hole I landed in.

                Life is funny this way. Things happen you can’t control and no matter how hard you try to figure it out the answer still may not bring relief. In this case I can’t even work around it because it’s a matter of keeping my family warm.

                Years ago I worked at a photography studio and this may seem off subject but it’s not. He lived in another town and I ran the studio when he couldn’t be there. If a problem came up all he would say to me was, “deal with it.” This completely frustrated me to no end and never left me feeling like I could deal with at all. Fifteen years later those three little words still jump up into my mind more than I ever thought they would. Sometimes it’s really all you can do.

                So today if you are faced with a challenge and you are struggling to find an answer, in the words of a wise man I once knew….Deal with it. I will add I think his photography studio was closed so it might be wise to pick and choose when and why you take this approach. Explore every other option first and once you have decided there just really is no answer that’s when it is safe to just….Deal with it.

Yes...Autism in the Amish! So why don't we know much about it?

              http://autism.about.com/b/2008/04/23/do-the-amish-vaccinate-indeed-they-do-and-their-autism-rates-may-be-lower.htm    

 

                 Above is a link to a very interesting article related to autism and the Amish community. You see a while back I wrote a blog about no autism in the Amish but since writing that blog I have had a little  voice in the back of my mind asking, what if that is not really true? I have even stopped into an Amish market and if it wasn’t so busy that day I would have asked to speak to someone on this topic. Looking back I wish I had.  What if the lifestyle they live just prevents us from really knowing very much about autism in the Amish? Yes, you can say I am going against my own blog on this one because I need to. Not necessarily going against it because my past blog was based on diet and that is important but my title was No Autism in the Amish and that may not be true.

                After reading the article above and a few others I started to think about the lifestyle of the Amish and how the simple fact of how they live could very well be a productive way for a child with autism to grow up making progress every day. It’s safe to say they are much more accepting of each others as they don’t have to keep up with social expectations most of us do. They have their own and largely based on working together and working hard. Could the constant process of daily routine and large support systems help autism to adjust? I think the answer to that is pretty clear if you have been closely involved with autism. Temple Grandin is known to say “Autism must stay engaged.” And although I have never spent time in an Amish community we know they stay engaged to keep things running. The children are expected to participate in running the community and they typically don’t attend public school. A routine of one on one learning in the same environment as they grow.

                I have also learned and you will see this in the article above, they do in fact vaccinate. Could it be rates of autism in the Amish are lower because they aren’t screened for it at the first sign of late talking or maybe a child that appears to have serious nature is acceptable so no need to run to a doctor for help? I also wonder if years ago when only severe cases of autism were reported if this was the same way of the world so to speak.

                Years ago families worked together at all things throughout the day. They sustained each other and young kids were expected to work what we might consider hard.  They instilled a constant routine as they grew up and many times the routine was in fact based on work and learning to go out into the world being able to continue on with the same family standards. That’s not saying kids aren’t still raised the same way but we can’t deny these same values are dwindling in our modern times. It could be during those times a late talker was ok and a child who wasn’t always silly or social was also accepted as long as they engaged in the family routine. Maybe that led to a way for an autistic to make progress by the firm ground they were living on. Accepted for their difference but also expected to keep up regardless.

                My grandparents wrote each other nearly every day during the 40’s and many of those letters get me thinking about the difference between then and now. The letters are serious in nature for the most part. There is a pride in accomplishments and pride in family and almost no, what my grandma would have called, funny business. Another point in the letters that really gets me thinking is a pictures they exchanged and how neither one of them knew how to fake a smile for pictures. Typically in those times a smile wasn’t faked for a photo so autism would have blended in nicely.

                During those times it could be a child who worked hard at one thing was totally acceptable. Not having a silly nature would have been appreciated to a point.  Not smiling on command was normal and a child with an ability to take apart a toy instead of playing with it may have been appreciated in regard to a work ethic. What we call meltdowns may have been handled the same way each time creating a constant routine to ease them. Being socially acceptable was not as important as being successful.  Success would have sustained the family. I am considering all these things in regard to mild autism of course but still points to consider when we look at the big picture of how society affects us as a whole.

                Yes, we may be overlooking autism in the Amish and yes it may be there but I would never argue the fact that we could learn a lot from that lifestyle difference and how quickly we jump to have children diagnosed with disorders. Yes Disorders are real and 20% of our children in this country have been diagnosed with some kind of mental health challenge but we shouldn't be so quick to assume Amish are not effected. What we should be quick to do is learn the differences in there community or remember might be a better word.

To medicate or not to medicate.....That is the question.

                Autism support groups via Facebook are wonderful and full of supportive inspiring people who take time from there day to sit down and really care about how others are facing challenges. Some offer advice as best they can and some just let you know they are thinking of you. Both are encouraging in every way, especially if a parent doesn’t have very much understanding in their personal lives. I have met some truly amazing people on these groups, both living with autism themselves as adults or raising a child with the difference.

                Every once in a while something happens that I think gives everyone in the group a reason to feel frustrated or upset with someone else for an opinion they don’t like. It really doesn’t happen often but when it does the tempers flare. It can range from a small disagreement to one that everyone could say something about but no way to keep from offending another group member so best to stay out of it is probably the general opinion. There are also those sick minded low life Facebook prowlers who may pose as an autistic person and will mock the difference toying with a parent’s desperation to care and help. I can only guess a person would do this for the gain of personal information or self entertainment. I won’t dig much further into that because a situation like that makes me feel a strong desire to vomit.

                Yesterday there was a debate regarding medication. Interesting topic to me because when my son was first diagnosed one of the first comments made to me by many people was, don’t medicate him. Always caught me off guard because the thought had never even crossed my mind, nor did my doctor ever speak of it. The debate was, one parent said don’t medicate and another felt she had to. Needless to say the debate got ugly but a comment was made that actually did put me on the defense for a moment. This woman stated something along the lines of; parents who don’t support medication don’t understand what true autism is. When I read that I was actually offended because I didn’t know there was hostility from parents towards the different levels of autism and this is just one person. I asked her if she could clarify what that meant and she did. Still a little hostile but when I really tried to wrap my mind around her situation I could literally feel why she felt this way. True autism may not have been the best choice of words as it was more the severity of issues she has faced with her son. I could understand why she felt a bit hostile reading other parents challenges that maybe in her situation would be huge progress.

                Its true many kids just don’t require medication to live daily but many kids really do and parents are forced to medicate to ease a child from different issues we may not understand. The emotions involved with having an autistic child are hard enough when it comes to society’s judgment but when you have no choice but to try different options that may or may not work,  I would think the judgment is even more difficult to tolerate. My heart breaks for parents and kids who are trying different medications and it ends up making a child worse and the parent isn’t heard when they discuss this with a doctor. They just keep trying because all they want is to see their child have peace. The again sometimes something really does bring the peace they are looking for.

                With so many questions surrounding autism and doctors having the same unanswered questions medication has to be an extremely difficult choice. There are so many what ifs or side effect concerns that you can’t answer until you try it. Even the doctor won’t know but when a parent has to choose between watching their child possibly hurt themselves and trying something that may work, it’s easy to understand why. An even harder part of the process would be to trust the person who tells you what to try because autism is a complete mystery.

                I personally wouldn’t medicate but in no way does that mean I can’t understand why someone else would. I would say true autism is every case diagnosed because you really just can’t compare one to another. Yes there are different severities but not one person who is diagnosed or one family who is challenged with it doesn’t face judgment. Aside from autism, human beings spend way too much time judging and not enough time understanding.