Little wonder

                                                    Because you take the time to read you help the future of autism make progress! Thank you from me and thank you from this little wonder.
JB Hallock

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.

Top 10 Not So Stupid Questions.

                 We are preparing to move back to my hometown and it is much bigger than our current location. Basically we have no options for our son to get an education we are happy with here and honestly the older kids are in need of better education and options as well. This is going to be a huge change for all of us in every way but a positive one.

                There are so many worries that go through my mind all of which are centered on my kids. We will be in an area with an actual autism center for Phillip and so much more for the older kids to experience. Also we will now have family to help out when needed and to just be a bigger part of our lives. A long overdue change!

                Now I have to begin thinking about schools for Phillip and how I will know he is going to the right place. Problem is, I won’t really know for sure until he begins. I know all of the Jr highs and high schools but a special education program is completely new to me. The one thing I worry about is how my son will treated like so many other people right now. The horrors are endless and I want to feel confident in the choices we make for him. Of course in the beginning of those horror stories other parents felt confident to. What can I do to feel I have done all I can? All that really comes to mind is questions, tons and tons of questions.

                The old saying “there is no such thing as a stupid question” is going to have to be exactly what I practice no matter what. Here is a list of questions that come to my mind at this point and I know I will come up with more.  New parents to autism tend to feel a bit defeated and with so much information coming at you, questions seem to fade away. With all the madness in the world and stories we see every day about kids being treated badly we have a right to ask any question under the sun. A caregiver or school should be totally willing to answer and be glad you asked.

1.       Has anyone who works for here, ever been accused of harming a child in another school or this one?

2.       When a challenge occurs at what point will you call me?

3.       Do you have clear understanding that every child with autism that walks in the door is not like the last child you encountered?

4.       Will you call me or speak with me right away when my son appears to be showing stress?

5.       Do you restrain your students?

6.       Do you have a seclusion room?

7.       Have you ever called the police on a student and if so, why?

8.       Have you ever left a student alone for extended periods of time? If so, why?

9.       How do you handle a bully situation?

10.   Do you understand even if my child appears to be tuned out, he hears and feels everything around him?

            So there is my top ten questions to begin with and when you consider the outcome of not knowing the answers to some of these questions, they are far from stupid. They are important and they should be answered before they have to be explained after something is handled completely wrong.  I will be praying when I find a school for my child, they will not only answer my questions but have all the right answers.

Try to be positive! Just in case...

                How do we deal with negatives that come pouring over us in life? We all get them and sometimes they are so overwhelming it feels like the negative won’t ever let us go. You would think if your child is diagnosed with autism that would be a negative you can’t get over but it’s not. I see it when I tell someone my son has autism and they jump quickly to think I am sad over this difference but I am not. The fact is I am intrigued by his difference and I love learning about it from someone who can offer me tons of knowledge, my own son.

                I have experienced some negatives in life and many of them I could have let take hold and never let go. This is not a way to live your daily life and your mental health depends on being able to get through knowing it’s temporary. Autism is not temporary no matter who says they can cure it but is also not a negative in our lives. Autism is just something given to my son and it’s my job to raise him at a level we can both be proud of. I see the autism my son has as a permanent situation with a positive future. Basically because I refuse to believe he will have anything less than that and I want him to feel the same way, even when things get difficult. That is not saying we don’t have some very hard days but the day ends and new one begins.

                We all know someone who never gets away from the negative hold that has grabbed them like a set of vice grips and they don’t realize they are stuck in their own misery. Hard things happen in life everyday to everyone, which is part of the adventure of being alive. It’s not a good feeling but it’s also not going to last forever unless you let it. Now there are some people in this world who don’t have any comforts and life really will never get better but most of us are doing ok in the big picture of things. Maybe I have unique outlook to thinks but the hardships are what gave me that outlook on life.

                Divorce is hard and painful but you get through it then you may end up in a custody battle that only hurts children. In fact I put custody battles pretty high up on the negativity rank for most deadly to the people you love the most. Break ups are no fun but sometimes the end gives you a glimpse at what life could have been and it’s a not a pretty picture. Loss of a job is hard but loss leads go gain so keep trying! I could go on and on with examples of things people allow to take hold forever but hopefully you get the idea and I am sure you can think of some things in your own life that had hold of you for way to long.

                Autism is a different way of thinking and truly a different view of the world in general. Our children still need to be taught to push on without constant blame. It is so easy to get lost in the negatives that are connected to autism. I know because I felt myself going there and I didn’t like it at all. Even if our children struggle we have to teach them the positives the difference gives them and the gifts they have as individuals in this world. They learn from us and how we react to life or even how we react to an autistic challenge. When you reach one of those challenges think very hard about your reaction and what you might be teaching your child along the way. Maybe they aren’t speaking or maybe they don’t appear to be paying attention but the information that I know my child is consuming all around him is not immune to people. The words they say and the actions they take are being filled in his mind even if he doesn’t show it at the time. In fact his ability to consume information is a bit intimidating. I am not talking about flash cards or the alphabet because I know these are boring to him. I am talking about things we don’t even see like the way a flag flies in the wind. The way the wheels turn on cars or bikes or the way the veins in a leaf look when you hold it up to the sun.

                I for one refuse to believe a child who is taking in so much detail in the world around him isn’t paying attention to the reaction of the people around him. We really don’t know for sure like every else about autism but no matter what challenges in life come your way, try to face it as temporary and better things are always ahead. Even if you really don’t think your reaction matters, do yourself and the people around you a favor and try to take a positive approach….just in case.

               

Autism for us and potty training....Think autistic!

                 Today’s post is about the potty so I will try to keep it clean in case you’re having a snack. My son is almost 3 and everything has pointed to ready to potty train for while now.  He is dry at night most of the time and his body kind of works on a schedule. The problem has been adjusting to such a huge change. Three years of a diaper and three years being comfortable with that process and with autism or any child, that change is a huge challenge!

                We started two weeks ago and I woke up one day thinking, we are going to do this beginning today. I laugh now because my optimism is sometimes over the top of the reality we face but being a bit unrealistic can sometimes lead to over thinking. Over thinking can sometimes lead to logic and I stress sometimes with that theory.

                We began going straight to underwear because after all wet isn’t fun so he will understand that after a few accidents right? No, it’s not that easy. Yes, he understands wet and doesn’t like it but there is the part of him that needed to be led into a drastic change of routine that didn’t frustrate him or we would in fact move backwards in the process. Another obstacle we faced was the potty in general. It is a seat with a big hole in it so that led to some real fear of sitting on it. Once I managed to get him on that seat with a hole then what? I could talk, dance, make weird noises, try to read a book, and use every other tactic under the sun to get him to sit still long enough for the magic to happen. Reality was we have autism and autism never sits still. Toddlers in general never sit still. I have been told stickers or a reward but in order to reward I had to find away to get him to sit to begin with.

                I won’t lie I was totally at odds and nearly broken with an answer to this. No matter what I read or advice I was given it felt like I just had to throw my hands up and call it good. None of those things were going to get a comfortable routine established and if I forced it I knew he would fight back and the battle would just grow bigger. Any parent who has been through the potty training process knows it can go all wrong with one bad incident.

                Here is the thing with autism that I know from my own son. Logic, reasons, and purpose has to be a factor. Boredom is the enemy and it is just another word for defeat with his difference. I put my mind to work with all of these factors running through my head and how to defeat them all at one time. There had to be a reason to sit to begin with. There had to be logic in the process meaning if he sits he will find a purpose other than going potty because he hasn’t found the logic in using a potty yet. I can’t explain that to him so I have to show him. Not show him myself so like so many people will suggest but show him through his own body. Taking him outside to pee on tree wasn’t going to work or I would end up with a teenager who only pees on trees.  I built something that gave him a reason, purpose, and soon will come the logic of why we sit. Is it the autism potty training answer?  No, probably not as it is different with each child.

                I will say in two days my son has sat on his potty without any problems. Sometimes he sits for just a short time and other times he sits for a long time. Last night he sat for nearly an hour and sat again this morning. He enjoys it and has found purpose in sitting on the potty. I am completely at ease with the process and know things will fall in line in his mind.

                I also know with a stroke of luck what I made for him inspired speech, counting, and a routine of sitting still. There are ways to work with autism and of course it's not easy. There are no easy answers to parenting in general. My sons mind never stops searching for purpose and things that ease him or interest him. Even when it comes to a process we should all understand like using a potty. There has to routine and purpose. I don’t know about you but a sticker chart sure wouldn’t motivate me to change my life from the daily comforts I already know. Three years of routine is not that easy to change for any child, but it’s not impossible either. If my idea bombs so be it and I will let my readers know but my unrealistic optimism that I pride myself on says we are pushing on with some awesome progress and my belief is it’s going to continue that way.

Temple Grandin saved the day!

               Yesterday was a difficult day for me. No one reason for it and it was just a day the positive forces inside me needed a rest. With that negativity had to room to break out. You see in the all my positive babble and constantly trying to create an understanding I really do have the days I question it all. Am I making a difference? Yes I believe I am but I am also human so life sometimes will jump up and bite me right on the backside.

                We have been attempting the potty training trials around here and I can say everyday feels like the first day we have started. This is an extremely difficult task in every way. We have made some sure progress as far as knowing we are wet and not liking it and we are finally helping with pants on and off but the sitting still on a potty seems like an impossible task. Trying to get my son to relax and be still for even a short time is much harder than I expected or maybe it’s what I expected and one reason we have waited to begin.

                I began to work on a project that I hope will help him to be still and not think so much about the process. This is also not easy because I have no idea if it will help or not. As much as I understand what autism brings my child I have my days wondering if I really know anything. He doesn’t tell me how he sees things or feels so I have to rely on my own observations and hope I am in tune with the autistic side of him. I could work on this project and it could totally fail at what I am trying to help him accomplish in fact I do have some serious doubts now that I am nearly done. I know his mind needs to be able to think about something else other than sitting still. If he has to focus on sitting in one place to long he isn’t going to relax to reach the goal. Or at least this is what I have been telling myself.

                I really felt yesterday like maybe I just have no idea what the heck I am talking about. Maybe I am just convincing myself I understand to feel like a productive mom. At the end of the day I truly doubted my own understanding in general even though I sit down every day and blog to help others understand.

                Temple Grandin the movie finally arrived in the mail and to be honest I wasn’t sure I wanted to watch it. I expected a movie about some poor autistic girl being broken by the world. I didn’t know if it was the best thing to watch on the day like I was having. I can say from the very beginning of this movie I was fighting tears. Not tears of being sad but just tears of being able to relate to the story. How her mother felt when the docs told her autism is caused by the old “refrigerator mother” syndrome. A cold heart was once to blame if you can imagine. What really brought tears to my eyes was the way the movie depicted Temple’s thoughts and immediately I realized I really did understand the difference! The questioning just went completely away with the visuals the movie gave me. A literal mind that never stopped trying to figure things out. My negative day turned right around and I was even a bit blown away by how well I understood. I have understood all along in a way that was just dead on and it didn’t come from books or research, it came simply from observing my son and knowing him as well as I do.

                This woman did amazing things and although her autism gave her abilities to figure things out easily, her accomplishments also came from the people her life that could see what she was capable of. They did not see autism as something that would hold her back but something that would take her places other people could never get to. In all her different ways the support she had allowed her to be different and be unstoppable at the same time. This is how everyone should embrace a difference and erase any doubt that a child can’t accomplish a life with meaning. Temple’s mother had to have days she wasn’t sure if she understood and days the negatives doubts took over but she pushed on and her reward was raising an unstoppable force. I am not saying my son is going to change the cattle industry but he will have a life of meaning if he is surrounded by people who allow him to. Last night when I went to bed I felt revived as a mother of an autistic child because knowing I understand is going to help him grow up understanding himself even when people just don’t get it.

Helping with chores or packing for Disneyland!

                Way to often I see stories of disabled people treated horribly. Disabled is impaired in a physical sense and they rely on the kindness of others to help them. We all rely on kindness of others in some way to survive this world but when a child or adult has a disability it can be detrimental to daily life.

                What is it that makes people treat someone with a disability so horribly? Maybe a genetic flaw or a difference the devil created just to stir up some pain in the world. Always throws me off when autism is considered a flaw but people who harm others aren’t considered flawed. You hear the stories all the time. Maybe it is a caregiver abusing someone who needs daily help, a child being restrained in an over the top way or verbal abuse from a teacher. Then you have even worse stories of kids being placed in confinement until a parent comes to get them at the end of the day. No one even letting them out to use the bathroom and they end up expressing their feelings the only way they can. Some of those ways are difficult to even mention. I remember a story a while back of a child being placed in a duffel bag in the hallway, and the school backed themselves up on the treatment. It was hard enough to imagine an education system that uses this tactic and then an entire staff that stands behind the tactic is nothing short of insanity taking over like a virus.

                So I have to ask this, if I found my child zipped up in a duffel bag lying in a hallway why on earth would anyone have to fight to defend the moral ground on that? The self control that these parents have is extremely impressive to say the least. It’s easy to read about someone else’s child and move on to the next story but actually being the parent who lives this nightmare would be a totally different story. They are faced with school policies and excuses for why these things are done. No moral policy is ever put into place by the way and typically the policy is so vague it’s hard to battle the moral ground. Maybe parents need to start requesting a moral policy so when it is broken the fight to keep their child safe is not such a difficult one. There really Is no answer to this, even camera’s won’t stop people from causing harm because if they are capable a camera isn’t going to stop them and it that is the only thing keeping them from this being an educator in general is not the line of work they should be in.

                A common mistake made by some many people is looking at someone who is disabled and thinking there is no feeling to them. Thinking they won’t feel pain in there soul, heartache, distrust, and keeping a memory of what was done to them. They can’t always express themselves so they are really a prime target for this kind of treatment.

                Think of it this way…you are 9 with a mind that is actually 5 and you have fought like hell to get to 5. You have had a bad day with no way to talk to anyone about it and your bad day is showing in whatever way you can express it. Even if you could talk about it you’re not sure how you would explain it because you are still trying to understand that social side of people around you. You get mad and maybe act out the only way you can. Now the only adult around is putting you in a duffel bag and zipping it up. You know if you try to get out more trouble will come your way so you wait…..wait for your mom to come. Now imagine you are ok with this because you have had to do this before and like I said you don’t understand the social side of people very well. That’s one reason mom sends you here…to learn social skills. Now you’re crammed in a bag sitting in a hallway, its dark and you can hear things around you. Maybe you shouldn’t have tried to express how you were feeling because the bad day just got so much worse and you know you have to come back tomorrow. Then you hear your mom coming down the hall and now you’re not sure if mom will be mad at you for being bad.  Completely confusing and painful to process in every way possible for a child and I would bet my own life it is never forgotten.

                These are the limits being placed on so many children unable to express themselves and when they do, they learn a disturbing lesson on moral ground and social handicaps that “normal” people are having so much trouble with. This is not lessons anyone should be learning and moral ground makes that pretty clear if a person has one to begin with.

                My son hasn’t started school yet and you could say it is one of my biggest fears yet with his autism. I can only pray we find a great system for him and people who have care for every child they encounter but for so many it's just not the case. This needs to change because duffel bags and broom closets should never be in the same sentence with children unless they are helping with chores or packing for Disneyland.

                 

"What can I do so he will play?"

                 It’s funny even when you don’t think you’re going to think about autism it happens all around you.  Football game this morning and although my daughter who normally lends a hand with Phillip was there, her dad was also and she doesn’t get to see him much so I didn’t ask her to help out. Seems like it would be easy to just let a 3 year old run around a school play ground and watch a game right? It’s not.

                Textures are amazing to him and it’s the things that run through his fingers he enjoys the most. Dirt is a huge one, saw dust, small rocks, and the list goes on. Once he finds one of these amazing textures he runs his hand through it, then he might rub it on his shirt. We then graduate to full on rub it on top of the head and put it in the mouth. It is his desire to completely investigate the texture and for all those who wonder why my child is covered in dirt, it can’t be stopped. Or at least I haven’t found a way yet. I have reached the point I just try to keep him from eating anything he shouldn’t. The rest will wash off in the bath and today was a very dirty day.

                Today I also found some pretty awesome inspiration from another child. A four year old boy went out of his way to play with my son. They threw some rocks and ran a bit, but I could see he was trying to talk to him and getting a bit discouraged when my son wouldn’t respond. Eventually my son would lose his focus and drift off into a texture he discovered. One second he might be running and the next it’s all about the dirt. It is nearly impossible to break his focus until he has investigated it to his standard. This happens all the time and I am used to it but people who aren’t around him don’t understand this.

                If there is one thing we can learn from young kids it is their ability to want to learn about each other. Not all kids are raised that way but when one is, you will see it and it’s inspiring. A short time later this boy was trying to get my sons attention to follow him and started to pull on his coat. An act of desperation when he just wanted to play like kids normally do.  I knew the pulling could potentially throw Phillip into a tantrum state so I walked over to see if I could ease the situation a bit. My son took off running on whatever grabbed his attention and this wise little man and I walked and talked. I explained to him that my son won’t always listen like we would like him to and he gets really into things he can’t look away from. The boy tilted his head and was trying to find the words for what he was frustrated about. Then he looked up at me and said with a sigh, “He doesn’t play like other kids.” I told him nope he doesn’t. He likes to watch dirt fly and feel grass and touch things to figure them out. Then this adorable little boy looked up and said to me “what can I do so he will play?”

                What I wanted to say was, you have a heart of gold and your desire to understand is something most adults don’t have! What I actually said to him was you can try to make a funny sound or do a funny dance. Maybe he will follow if you run. Then he thought for a second and took off running to see if my son would follow and he did exactly that.

                We could all learn from this young man for his will to try and his will to understand another child who really doesn’t get much understanding from strangers. I hope he never loses that desire and masters that as he grows up because you could say he has his own difference from so many people in the world. Empathy, care, the desire to connect, and not being afraid to ask questions! He did give up after a while but let’s be honest, playing with someone who doesn’t talk or respond is draining and he eventually was drained. I see kids like him as the positive future of autism with so many people not understanding or not wanting to understand, the entire answer to some of the autism challenges came out of a four year olds mouth. “What can I do so he will play?” there you have it! I could sit down and tell this little guy all about what people think cause autism, how people try to cure autism. I could talk about interventions, and sensory integration toys, diets, genetics and even bowel troubles kids with autism have. That one simple question he asked I wasn’t even sure my suggestions would work.

                So to the world of autism I would say this….I know a four year old who is waiting for an answer to a question we all have on our minds. He is not autistic but he is the future of how society views the difference and that is what we should be working towards.

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.

               

The Martyr Syndrome! The only cure is early intervention.

                    I am going somewhere today I didn’t want to go but it is making me so crazy I just have to. The martyr parent is just too destructive to ignore. You probably know one or possibly are one and this is a big problem for kids with a difference. So many times I have read stories or come across a parent who is at odds with an issue they are having with a child and yes I completely empathize but many times I am left with a dumb founded look on my face. The martyr parent is the one who uses the difference, no matter what it may be to create pity for them and sometimes they don’t even know they are doing it.

                    Some time ago I came across a picture someone posted of a wound their child had given them and it stated “I hate autism”. I was frustrated with that message because it also stated the child never behaves that way with anyone else. Only towards the parent and only when he or she doesn’t get there way. To me this translated as a choice and control the child was actually showing and I couldn’t understand the picture being posted with extreme hatred towards the difference. That makes people want to run away from learning about the difference.

                Or there is the story recently being blasted around the internet of the boy at school whose parents hadn’t paid the lunch bill so he went without lunch. I reposted that story basically because I thought it was odd the parents weren’t called earlier in the day to either pay the bill or bring a lunch. Notifying the parents of their policies before the child had to skip lunch. What also bothered me about the story was if the child wasn’t autistic would it still be internet blasting worthy? No. People would simply say pay your lunch bill but if you throw autism in the mix it’s a human rights issue. This doesn’t just happen to autistic kids and yes he should have been fed but what about the bill? Why does autism over shadow how the problem came about? It’s pretty clear mom and dad didn’t forget to pay the internet bill but because it involved autism the mistakes by both school and parents fade away. Then you have a child stuck in the middle of adults who all screwed up and he was hungry.

                If we want autism to be understood we have to stop the martyr syndrome that is affecting so many people. All of sudden the word autism alone makes people want to turn and run. They don’t want to hear complaining or a plea for pity. They want to hear what autism is and how it operates. If we focus on the negative no one is going to stick around long enough to learn the positives. The hardest job anyone will ever face is parenting, that is if they are working to be a good parent and yes autism creates some complicated challenges. I have three kids and completely changing the way I parent is like walking around in the dark all day. I have to find my way to the light switch so I can see and I do run into walls all the time. I can say this way of parenting is kind of exciting and this might come as a surprise but is also fun! I never get to stop thinking and I like it. A vacation would be nice but if I didn’t take my kids with me I would be bored to death. Everyone is guilty of the martyr syndrome at some point and Lord knows I am one of those people to. You could probably find it my blog a few times or more, but we have to stop this madness or it’s going to become a negative side effect of an already complicated difference. Don’t be a martyr! Our children need us to be a positive voice for them and help others want to learn.

                The martyr syndrome is contagious so watch out for it because once it takes hold the only cure is to know that you’ve caught it and early intervention!

John Rzeznik 'I'm Still Here' tribute to Autism Speaks

Tribute video today that I did not make but the song to this video literally brings tears to my eyes when I think about how misunderstood so many kids are.

What I want...but I am a dreamer.

                The worlds gone mad or at least the people in it have. We could say it’s been going mad for some time and now it is starting to boil over. I don’t watch the news daily like I used to because it’s depressing and to be honest makes me never want to leave my house.

                On that note here is what I want, and I know others feel the same way. Simple break down of what I would like to wake up to tomorrow and I know I am a dreamer. I want to turn on the news and see back to back inspiring stories of people doing awesome things. I want to know my kids are going to school and will come home with a quality education by high paid quality teachers. I want the teachers to know I will raise my children and all you have to do is educate them. I want less money in prisons and more money into our children’s future and less kids on the free lunch program because parents can afford to feed them healthy meals. I want people to feel the system is a way to build life up and a not a way to stay down. Getting off of it should be the goal and actually working towards it.

                I want to see our president on TV and feel secure when I see his or her face. I don’t want to hear remarks about the color of skin because no one cared when a white man was in office. I don’t care if Papa Smurf is our leader as long as I feel respect and trust when I hear is voice, which I actually do feel respect when I hear Papa Smurf talk. No one cares he is a little blue man because he is wise.

                I want wars to stop being fought for reasons most people don’t understand and soldiers to be respected for being the kind of people who will risk going to war in the first place. I want politically correct to be thrown out the damn window because the only way to be politically correct is to not speak anymore. I want unknown cancer causing ingredients taken out of our food because there is no point in finding a cure if we don’t address the cause but I also want a cure. I want to go to the doctor and for a simple reason and not be charged an obscene amount of money. Four hundred dollars to take my blood makes me have to choose between getting my kidneys checked and then having to sell one to pay to bill.  I also don't want health care that takes my choices away so if I had to choose between a high priced choice and a dictated free service, I would pay the price.

                I want to gas up my car for under what I have been paying because once I put gas in I may not be able to go anywhere. I want to go in to pay for my gas and get smiles from the person working without having to try and force one out of them because even if your job sucks at least you have one. I want shelves at eye level with my child to full of organic fruit or healthy snacks instead of five hour energy and junk no one should be eating because profit is killing people by way of our food supply.

                I want Alcatraz to be up and running for child molesters to have a neighborhood they are actually welcome in forever. If we have to build more concrete islands surrounded by sharks to hold them, fine, that's a tax we all can agree on. No internet, no TV, no recreation hour, nothing but concrete walls and fed the same crap our kids have been served in schools. It is pretty comparable to prison food if not worse.

                I want to believe in God without being told I am delusional and say it without offending someone who doesn’t believe the same thing I do.

                This is a blog about autism so I need to go there as well. I want my son to be autistic without media talking about it like it’s a life sentence. I want people who fear it to understand it and know my boy is just that. A boy who is not like any other but still a boy who plays in the dirt, smiles, laughs, and feels like all of us do. I want people to come together when it comes to autism and fight for education systems we all feel good about. I want people to stop trying to find things to blame and move forward. If there is blame it will be found eventually but I think some people really do see autism as a genetic trait not a disease to fear. I want to be able to talk about autism and tell someone I had my child vaccinated because I felt it was right and not be looked at as though I made a bad decision. If you vaccinate or don’t vaccinate, either way your goal is protect your child. Judgment isn’t necessary. Most of all I want people on the outside looking in to see my son the way I do. A child with a difference who needs what everybody else on earth wants....understanding.

Sometimes it's just cupcakes

                 We hear a lot about routines and how important they are and this is very true. Routine is mandatory for a child with autism because it makes them feel at ease with daily life. Not basic routines but detailed routines and can be the smallest thing that creates comfort. Many of those things my son has instilled in his own way and I understand he requires it. Some of those things have also made parenting pretty dang easy at times.

                Bath time he has a bucket of toys to play with like all 3 year olds. The difference is when it’s time he puts the toys in the bath himself and likes me to put the bucket back in the cabinet. He has one toy he puts in the edge of the bathtub and doesn’t play with, ever. He places it in the same position each time and it must sit in that spot until we are done. No matter what he will notice if it is moved and he will move it back. When it is time for the bath to end I hold the bucket and he puts the toys in and that one toy always goes in first. I don’t have to say bath time is over, all I have to do is hold the bucket on the side of the tub and he knows the routine. No argument at all and it is so easy on both of us. It took my son two years to actually lie down in the bathtub and just as long to actually explore the other side of the tub. I would always tell him to go to the other end wondering why he refused but now I get it. Routine and he instilled it on his own to feel at ease.

                Yesterday was a long day of trying to potty train and this of course is major change in routine for him. Not an easy thing to instill and I know it’s going to take a very long time for him to feel using a potty is part of the daily habits. We didn’t have any luck actually using the potty but I did see an understanding from him and the desire to try which is a huge blessing towards our goal. He could have rejected the idea all together easily and I would have been at a loss for what to do. Potty training an autistic child is one thing you will hear so many parents agree is extremely challenging and some aren’t able to find a way to make it work. I actually have feared it to this point but considered the longer we wait the harder it may end up being.

                In all of the chaos and trying yesterday I was exhausted by the end of the day. I felt like I had ran a potty training marathon all day long and never reached the finish line, but still felt progress. Bedtime came and I told Phillip it was time for bed. He stopped playing and appeared to still have a full blown dose of energy to burn but ran directly to bed. He crawled into bed, pulled the covers up over him and made sure to give me a kiss and squeeze my neck. Just like that he curled up and went to sleep. It’s not this easy every night but I can say nine times out of ten it is. I don’t think everything my son does is due to some autistic twist but the routine side of things really does ease him. It really doesn't get easier than this and I see it as an awesome side effect of understanding him.

                Of course we also had a day this week he tossed himself on the grocery store floor and refused to move. I am sure the people in the building felt he was throwing a tantrum due to his difference but between me, the checker I giggled with, and my son it was not autism. It was the yummy table of cupcakes that was presented at a perfect eye level for him as he walked in the door.  He looked to be overwhelmed and people looked at me as though they felt bad for me and my little autistic boy. Truth was, he is three in a month and he wanted a cupcake. That’s it and nothing to do with autism whatsoever. Just the pack of beautiful toddler sized icing stacked cupcakes, a sweat tooth, and a little boy with a strong desire to eat one. Routine is comfort, sometimes it’s an autism inspired meltdown and sometimes it’s just cupcakes.

Tin Tin...Main Menu Only Please

              My son has always loved movies that are either Pixar or anything involving antique airplanes. The sound of a plane alone can completely grab his attention and he will totally forget all that is around him. When he was diagnosed they pulled out a small toy airplane and he immediately stood up and started to execute detailed flight patterns with it. Everyone just stopped and watched him in amazement. One woman said it took her breath away to see him do this. He will take one designated plane and spend time just practicing air tricks and making propeller sounds with extreme patience.

                I don’t know why he does this or how it came about but it is very interesting to watch him. About a month ago he started watching Tin Tin and loved the flight pattern of the old plane in the movie. Not only because it was similar to his chosen toy plane but he perfected the way the plane moves in the movie. He started by watching the entire movie then slowly it shortened up to the beginning of the movie that involves the plane the most. The problem now is the main menu. The only part he wants to watch is the main menu with the plane flying around the screen. If I attempt to play the movie he lets me know exactly how he feels about it and I don’t enjoy the reaction at all.

                This morning we have Tin Tin, main menu only, playing on the TV. Phillip is practicing his flight patterns and propeller sounds and I have to say he has mastered both. He has two other old style airplane toys that must be parked in a certain spot on the coffee table at all times unless he is playing with one. If you move one even an inch he will notice and put it back in its proper parking spot.

                On our way to football games yesterday I decided to bring one of these planes along as a backup plan for when he gets restless. The problem was I removed the plane from its designated parking spot. Most kids want to take a special toy with them but he was upset with me when we got in the van. He wanted me to take the plane back in the house and park it on the coffee table. He doesn’t speak and didn’t tell me this I just know.  I knew if I could get him away from the house with the plane he would not be so frantic about the situation. I put the plane in the bag and later on in the day gave it to him, with no protest. He took it and started practicing flight as I expected.

                This part of his difference is so interesting to me. What is it the science that creates that kind of order in his mind? I know it’s autism but the neurological difference between his mind and mine is what I would love to know. My mind is never in order and I have to force it to even come close so the complete opposite and to the extreme is fascinating to me.  Just an ounce of that order would benefit me and just an ounce of my disorder would benefit him.  These extremes happen all day long and many people don’t understand what he is doing but I do. I have to fight to pay attention and he fights to break his attention. A person could say you understand because you’re his mom but I really think a lot of it is the difference to an extreme and a respect I have for it. Society considers my disorder a weakness and his order a weakness but then again society is way too hung up on weakness and needs to focus more on the strength of others.

Every moment is temporary!

                My oldest child is 14 today and it’s an odd feeling because it just doesn’t feel like 14 years should have gone by already. I think about what we have all been through in the last 14 years and then I find hard to believe it all fit into only 14 years!

                What I really think about is what I have learned about being a mom that you just can’t find in any how to book at your local book store. The little things that really are timeless and customized between you and your children. To begin and any good parent knows this but when your child is born it’s the day you find out you knew nothing at all until that very moment. Every day to come is unpredictable and an adventure that never ends. By the time you become a parent you think you have love all figured out until you hold your child and it’s that moment you realize you had no idea what love was because you never knew anyone you would truly give up your life to protect until you held that little hand that can’t survive without you. The day your child is born is the day you are born.

                You learn sleep is optional and the things you can do without it are impressive and even though you have no idea when you will sleep again, you’re running on empty and kids are the fuel that keep you going.  Children’s shows are not annoying because sometimes seeing Barney dance saves the day. You underestimated the ability to grocery shop cheap and fast and nearly can’t remember how that works. Laundry is not ever going to get completely done so instead of trying to find the bottom of the pile you start taking pride in how clean it turned out. You become a human lie detector based on facial expression alone and mastered this ability to a point your child thinks you have super human powers. Your car will never be spotless two days in a row unless no one is allowed inside of it and sun block does in fact ruin a paint job on a vehicle. Rocks are not just rocks they are natural wonders that must be kept in a safe place for possibly years.  Flowers are cool and you should pick them all! A blanket is not just a blanket but a germ infested best friend that you can only wash very late at night. Satan is the co founder of Wal-mart, Toys R Us, and Chucky Cheese. If you have been to all three of these places with your children you have officially been to hell and back. Disneyland is in fact one of the wonders of the world and so are water slides.

                Pets are not just pets they have feelings and if for some reason you have to put one down you will be labeled a murderer for the rest of your life. Putting rainy day money away is essential because even the Tooth Fairy suffers from inflation. You will be told the 80’s are the olden days and no matter how much you try to deny it, it’s actually a painful truth. Super Nanny and Martha Stewart are fictional characters created for entertainment purposes only. Do not try to be either one unless you are being paid millions of dollars for you effort and you have a nanny of your own to make time for your perfection.

Final thought….Kids are the most amazing gift we can ever be given. They are full of honesty, wonder, and unconditional love that you teach them from the first day you hold them. No matter what is thrown at you enjoy every second and yes even the struggles create memories that you will cherish. I have two non autistic kids and one with autism. Each one of my children has taught me necessary lessons about life that I could never express how grateful I am to be able to learn. The differences between my children are never ending and all of those differences are extremely important no matter what they may be. Tackle the challenges as though they are temporary and cherish the awesome moments like they are temporary as well because it really is all exactly that. We are never promised tomorrow although many of us like to think we are, today is here and if you are reading this use today to consider what kind of parent or person in general you would be if you lived as though every moment is temporary.

I must see these little autistic mice!

                 Every day I log on to facebook and there is a tidal wave of autism information rolling in. Inspiration, personal stories, new articles on causes, and ways to raise awareness.  Of course I am connected to all these things by choice so I asked for that tidal wave and it keeps me informed. I like to know the opinions out there and read different perspectives.

                What I see in a lot of the articles I come across is a very negative tone towards autism. Speculation as to why some kids have it, how its growing so quickly in society and it sets a ridiculous tone that autistics are mutants. Really no other way I can think of to describe some of these things I come across. When I am done reading some of them I feel like the mother of the Wolverine from X-men trying to protect him from a world full of fear trying to cure him. Yes, you will see autism described as a genetic mutation all the time and to me it sets a nasty tone. I prefer the words genetic evolution myself because it takes the mutant label off my child. I especially find the articles with mice involved entertaining because an autistic mouse would be something to see!

                I am ADD, a neurological difference, which is how I see autism as well but I have never heard anyone say ADD is a mutation. If it is then I guess I am the mother mutant and my child would be second generation mutant.  It is exhausting, every word of it, and ridiculous in so many ways.

                Seems to me society has decided if they can’t understand it they must find a way to correct it even if understanding would be a much easier process. The millions if not billions of dollars spent to fix people couldn’t possibly benefit them in a educational environment or educating adults to work with autism because we all know there is a desperate need for that. I haven’t communicated with any autistic adults who are sitting around waiting to be cured and children don’t understand the world doesn’t understand them…yet. Autism is constantly quoted right alongside schizophrenia which is a very old and worn out connection that has actually been tossed out as a connection at all. A mistake from way back in history is how that all came about, and fueled by a lack of understanding.

                Here is my plea to all the writers and researchers involved in autism. Leave schizophrenia out of it unless you are discussing the misunderstood history of the difference. Please keep in mind when you write you may have an autistic audience and protective parents reading your words. Make sure your words are directed in a positive way because some folks won’t settle for less. If you could kindly leave rodents out of the matter or even better, please clarify what an autistic rodent is like that would also be appreciated, because every time I read an article like that I am intrigued by these little autistic mice.  For the love of God can we please go easy on the mutation talk unless that is in fact 100% what autism has proven to be and it hasn’t. Last but not least for writers and readers, please remember there are people who are not angry about having autism. Adults and children who want to be treated with respect and some of these articles really do cause harm to how the difference is depicted in society.  

                At this point I think many people are so run down from “suggested” studies, lack of information, false information, and reach up and pull it out of your backside theories we or I am getting slightly fed up with acceptance and understanding being overlooked. The entire reason I began this blog was so my son would not be looked at as flawed or in need of fixing and I will not stop. Maybe one day in our adventure I will get to see these little autistic mice and then I will have seen it all.

Are you a broken parent?

                In all the awesome things autism brings to our lives and there really are countless things I appreciate about the difference, there are also little things that in all honesty can be a weight on my heart. My son is reaching three and I guess you could say his autism is much more clear now when we are out an about. It used to be it was a temper tantrum that made the autism shine through, but now you really can see it when he is just being himself. The wandering never stops, the distractions are constant, and not speaking is a bigger issue now at his age.  

                Nearly every day I see things that make me wonder if parents realize how privileged they are and if they really truly appreciate it. I think many parents with an autistic child see these same things everywhere they go. A little girl the same age as my son runs up to her mom and expresses what she wants by saying it and mom isn’t listening. Maybe I see a family in a grocery store and they have a toddler who is sitting in the cart enjoying the ride. I will see a mom or dad walking and their child is walking behind them and I notice they don’t even have to turn around to make sure they are still there. The smallest privileges that I know they don’t appreciate as much as they should. If a toddler is thirsty or hungry they tell you but I have to constantly offer a drink and food or distractions will prevent him from doing it. He doesn’t understand personal space so I am always there to guide him and following me is a rare treat.

                All of these things I accept and I have adjusted to because he is my son and I love him with every fiber of my being. I will do what I need to do for him every day of my life when I am needed and that is a natural instinct. I appreciate the small moments of celebration when he expresses himself or stays calm in an overwhelming situation.  So what weighs on my heart from time to time? I have never heard my son say I love you. I know he does because he shows it all the time. He is very loving with his hugs and kisses and I see the love he has for all of us. The fact that he can’t say it is hard for me because I think he wishes he could say it back to us. Many things I know he wishes he could say but as much as I want to hear it I can‘t imagine what it is like to be unable to say it.

                I am not an autism parent looking for pity over this. I am an autism parent sending a message to any parent who hears I love you from their child. When you hear it, feel it like it’s the last thing you will ever hear. Say it back like it’s the last chance you will have to say it because it is a privilege. So many things that are going on around you that are reasons to celebrate and be grateful for every second with your child, and it could be you’re missing it. Autism parents mention all the time the things they see and wonder if the parent appreciates what they have. People might think with a child who has autism that we feel sorry for ourselves or are broken but to me broken is being unable to really take in what is right in front of you. I see broken parents all the time and I can say most of them do not have an autistic child.  On that note I need to sign off because there is a little boy standing in front of me and he has I love you written all over his face.

Common sense, Pesticides, and GMO's

http://www.kidsforsavingearth.org/mnchec/articles/pesticides.htm

               There is some debate lately about the safety of foods treated with pesticides and if organic is really more beneficial. First off I don’t believe anything caused my own sons autism but genetics but I also don’t believe that is the case for everyone. I can say I do really have days I am not 100% set on genetics myself as to a cause for my own child. It can be an emotional roller coaster and I have just accepted the difference as something given to our lives for a reason I do find the beauty in it every day.

  Autism aside if we really step back and take a look at the direction of health in our society we are in a major crisis. It’s not as simple as blaming McDonalds for creating the Super Size option or our desire to have everything instantly including our food. Take a good look around at people in general and you will see the crisis happening all around you.

                Who is to blame? For one, ourselves and there really is clear evidence linked to the negative effects to what we consume. Above is a link and it’s an older link but some clear info on pesticide effects on our bodies and children’s bodies. Keep in mind these studies were done in regard to pesticides being used IN the environment. Now consider it is being genetically built into our food so instead of being in the air, in a water supply, or on our food, it’s genetically part of it. Giving it a direct way into our system disguised as something we believe to be healthy.

                The information we lack that would really set it into the mind of the general population is a study that clearly defines what will happen to you if you consume genetically altered food, and altered to destroy pests from the inside out, on a daily basis over a long period of time. No healthy person is going to step up and say, I would like to consume pesticide soaked food for a few years and have my health tracked so we have a clear study. No healthy sane person would do this because common sense tells us that person could be offering to take on something that they may not recover from. So we have to rely on bits and pieces of evidence gathered over time from different sources and our own common sense.

                Food awareness has become very important to me and not just because of what I have learned after days and days of research to learn about autism, but because when I look around in society it seems like the evidence is all around us. No one is bionic and the human body is built to break down with time, but could it be we are making the process faster and more painful just by ignoring the effects of what we consume? If we somehow changed our mindset that it’s just small doses so it won’t harm us or the thought that if it is on the shelf and says healthy it must be, would we see the health of our society start to improve? Now that is a study I would love to see happen. Totally unrealistic but I am an unrealistically optimistic person most of the time. I am no doctor or Harvard graduate but I am a mom with common sense who has changed her lifestyle to organic and aware…..and I can feel the positive effects every day since.

               

Wal-Mart cares....I am sure of it!

http://www.care2.com/greenliving/wal-mart-to-sell-monsanto-gmo-corn-this-summer.html

                Here is a link to some info we all need to be aware of. No surprise Wal-Mart will be selling GMO’s and completely expected. I am posting this article number one because people need to be informed on every level. Number two to get you thinking!

                If you don’t understand what this GMO corn is, the simple break down is the pesticide is genetically part of the food. You can’t avoid it and the effects on your body are completely unknown. We know pesticides cause many serious problems but now it's in the form of DNA, not just a crop dusting. It is known what It does to insects which is destroying them from the inside out, but to people is a mystery so far. Although I am sure the affects will be known in time. I suppose we could assume we are above the laws of nature and we are immune to any destruction from the inside out intent behind the GMOs but that is a pretty risky way to think.

                Interesting thing to me is Wal-Mart started selling Autism Speaks office and school supplies just a short time ago. Much of the proceeds go towards research and I am sure much of those proceeds go into a fat cats pocket or they wouldn’t have agreed to do it. Some people seemed excited to see autism awareness products for sale on the shelves and some weren’t so sure it was a positive thing in regard to autism. Popular opinion seemed to be many people were glad Wal-Mart was stepping in to raise awareness but is that really what they were aiming for? My personal opinion is no because anything they place on the shelves has to have a profit involved and a large profit.

                This is what I want you to think about. We all know there is no direct cause or answer to autism and if your mind works anything like mine you have decided with all of the info being thrown around there is many causes. Including the simple fact it is genetic and that’s the way it goes. So why on earth would a large corporation who appears to care about the cause of autism awareness also decide to sell genetically modified food knowing the affects are unknown? The answer is simple….they don’t care. They could even sell the product and take it upon themselves to label it but why would they sabotage their own sales by making sure everyone is aware. Wal-Mart also is known to sell cancer awareness products but there is a large profit margin on that to.

                Before you get thrilled about awareness products or think GMO’s wouldn’t be sold if they were unsafe, think at the level of why it’s being sold to us. The big picture is they don’t care about autism, cancer or what GMO’s will do to us because we are all numbers and profit to them.  The bottom line is YOU are profit unless you chose not to be. You and your children are people who deserve to be treated accordingly. Don’t settle for anything less or less is exactly what you will get.