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.