Even God has a challenge.

                My fourteen year old son has the curse of thinking too much. Some would say that is a curse but it’s really more of a gift if he learns to focus it the right way. Fourteen is a hard age to analyze the world around you and try to make sense of things.  Answers to everything are impossible to find and last night he wanted to talk God with me for a bit. He has reached that time in his life he wants proof of God and evidence that God is real. I wanted the same at his age by the way and I hear a lot of people looking for the same thing before they decide to put any kind of faith in what they can’t see.

                It’s a hard to explain spiritualism to a teenager who still has a ton of life experience ahead but one thing he wants to understand is how bad things happen and keep happening. Everyone wants a better understanding of that, because according to Sunday school as a kid God has the power to just stop it. I remember thinking as a kid God was this wizard in the sky that could just wave his hands and fix anything if I asked. I know now that is not exactly how it works but the way I was taught led me to believe that. He’s magic so why doesn’t he just wave his magic hands and make everything magical? It took me years to discover the answer to that.

                First I questioned God like my son and then I moved on to being mad about things God should have been able to fix which at one time in my life turned me into a non believer because I didn’t see any proof either. Even at that point I was still looking for a way to believe because I was raised to believe in God and wanted to. I had blessings in my life that already proved some kind of higher power.  There were many times over the years I snuck into the back of a church hoping I would find some kind of evidence in the sermon that would change my mind. It never happened and in fact every time I visited a new church all I found was a bunch of people either looking for the same thing or so flawed they made my questioning stronger. The last time I walked into a church for a sermon was nearly ten years ago and it was after 9/11 happened. The pastor gave a sermon in regard to terrorism and Muslims. He called them the enemy and made some reference to the devil but this wasn’t the God I was looking for. On my way out the pastor cornered me because I was a new face and asked me to return the following week. I told him how I felt about the service and I would not be back and that was that. His face was a bit shocked by how I felt but to me he was just another man speaking on behalf of God. He wasn’t any better or worse than me and I figured if he could do it, so could I. After all a sermon based on hate wasn’t exactly what I was looking for. I like to think most churches don’t do that and I stumbled into the wrong one that day but I might have needed to.

                At that point I found my answer that was actually always there, it just took some time to see it. God has a challenge and his challenge is people. Miracles happen, I know because I have had them in life and prayers get answered. Prayers also go unanswered and many times that is a very good thing but one thing I realized God can’t do anything about is the choices people make and what comes from that. He can come into our lives but he has the challenge of people making choices that lead to bad things. He has the challenge of people representing him wrong or representing him like a magic wizard in the sky. He doesn’t make the decisions of man that lead to all these things we want him to wave his magic hands and fix. I do know once I realized God was challenged by the human race, I stopped blaming him for things he didn’t cause. I started to realize I was one of his challenges and working with him was much more in my favor than against. Life changed and even the hard times caused by my own choices or other people in my life, weren’t so hard anymore.

                I didn’t write today in regard to autism unless of course someone reading this blames God for it or leans on him for strength. I wrote to remind us we are all challenged by something and even that big magic wizard in the sky is challenged by each and every one of us. Maybe if we took a bit more notice of him in a world set to deny him we would find that proof so many look for by way of strength and a little ease when times are hard. After all hard times are something just about everyone can agree on right now and the interesting part is it has all been caused by the flaws of man.

Cameras and not just for protection but for education.

                This is something we all need to get on board with for a couple of reasons. Number one reason that comes to mind is to stop abuse or at least have a way to tell the story when it occurs. Too many kids can’t communicate and too many people tend to discredit children when they are able to speak. After all it can be difficult to believe anyone would purposely harm children but it happens more than we care to think to about.

                The second reason that comes into my mind is answers. Teachers are busy and can become just as overwhelmed as the students they are teaching at times. The triggers for autism can be so small and hard to detect, often times no one knows what they are. That’s when a child is restrained or placed in those horrid isolation situations. Autism is complicated to say the least and being that every case is so very different it truly takes more than one person to keep up. There are times the trigger for a meltdown is there and no one knows what it is.

                Cameras could allow more insight for parents, educators, and specialists to discover triggers. If a child is consistently having difficulties at school that no one understands why not let the parent watch what a camera picks up. Parents know their children and it could be in many cases whatever is causing the problem can be spotted and adjusted to ease the problem. If not a parent than a specialist could easily observe footage and bring things to attention that others aren’t aware of.

                Not every case holds an answer but what if many did and we could help by simply studying what a camera can see and a busy teacher cannot? What if camera’s won’t just protect our kids but pick up answers for them at the same time. I know many times my son has gone into a meltdown over the smallest thing no one understands but I am able to know what it is just from the time I spend around him. It doesn’t mean I can always fix it but knowing what it is helps to understand and that is what these kids need. So many teachers are doing an awesome job but they do have a room full of kids to manage safely and make progress. Not an easy task along with trying to get to know each individual child’s needs and trying to break through the communication barriers.

                We need to look at cameras as not just for safety but for insight and help to spot those little things it might take someone else to see. Maybe instead of a phone call home saying a child has lost it yet another day this week it could be a phone call home asking a parent to come in and review the video and see if anything can be spotted that is leading to the upset during the day. No mystery, no I wonders, no why is this happening.  Camera’s can give parents and teachers a way to communicate with each other and for the child. Even if no answer is found the trust that everyone has done what they can to find it is a big step for the entire process.

Padded rooms piss me off and they should piss you off to.

               Recently I learned in my state and I can imagine many others isolation rooms, padded rooms, and restraints are not a tactic that needs to be mentioned to parents. I was under the impression this is something a parent needs to agree to and that is not so. They don't even have to know.  I am going to put this as simple as possible…padded rooms piss me off.

                Not just padded rooms, isolation and restraints but the unethical and need I say abusive approach schools are taking. There is no reason under the sun any child should be put through this treatment and sent home at the end of the day as though this is what getting an education is all about. Many times unable to talk about what was done during the day or often times it’s not understood. Autism learns social behavior from the behavior of others. If mom drops her child off for the day and part of the day means being dragged into a padded room then that child might believe this is part of the day and that is that. The wrong factor doesn’t click and if anyone is working near autism they know this, or had better know this. 

                Anyone who works with autism must know what happens during the day will affect home life and the days ahead at school. If they don’t know this, get out of the special education system please.  The use of these padded rooms always follows a typical abuse pattern meaning, the room is given a name like jail or naughty room. Quiet room is my favorite one because it sounds completely harmless, it’s not. All of these titles sound similar to a time out which is a basic discipline tactic used everywhere so it doesn’t sound as bad as it is. The school does not have to notify a parent and most of the time will not. A recent story I read was a boy who had been placed in a padded room for four years beginning at the age of 6. Mom never knew because the school never told her, didn’t have to. If this was not abusive why would it not be known to a parent? Why would it be ok to do a child who can’t speak without knowledge to anyone outside of the system? If there is any kind of understanding of autism at all, it would be known this tactic could cause a huge number of problems. I find it very hard to believe schools don't know this and keeping this treatment secret until a child is able to talk about it, if ever, is abuse.

                If you research padded rooms you will also find prisons use them and most are in better shape with more space than the schools are using. Lets repeat that…PRISONS USE THEM. Now let that sink in, schools and prisons. How does a prison put an inmate in a padded room? Force. How does a school put a child in a padded room? Force.

                Maybe padded rooms in prisons are a bit nicer because we put more money into our prisons than our schools, which brings to the point of why schools would put money into something like this to begin with. You don’t have to be an autism parent to get pissed off about this and this is why, there is no limit to who can be put in these rooms. Nothing says a parent needs to be notified therefore nothing says these rooms are only for a certain group of kids. They might say that, but legally there is no limit. After all the only reason a padded room in Longview Washington was discovered and its use was stopped was because a mainstream boy was being put in it. A neurotypical boy who was able to speak and tell his mom long after the treatment began. It was only then the outrage began and something was done. Even then some people felt it was ok for special needs but not kids who don’t have “problems”.

                To end this, anyone who is working with autism or creating autism programs in our schools and feels the use of a padded room is a form of education or treatment is a damn fool. They have no business being anywhere near our children. We cannot fight everyday at home to understand our children in a way that creates progress and in a way no one else does only to send them to school and have this happen. It completely defeats the all we work for and what school systems are supposed to be working for. Progress, social development, care, independence, education, trust, faith, and love. None of which are found in isolation.

Love from a sibling and the door is open!

                It can be hard for the older kids to have fun with their little brother. They do have fun with him but many times a challenge gets in the way and let’s face it, teenagers don’t always want to deal with it and they shouldn’t have to. It’s part of life though and they do know that. They also love their little brother like crazy so they take those challenges pretty well even when they don’t make any sense. For the most part they are very patient and take the moments in that aren’t a challenge just like I do. Lucky for them many times when a challenge hits they can escape to their bedrooms if they want to. I have also watched seen them step in from time to time and successfully grab Phillips attention in a positive way.

                Lately my daughter has discovered a way to just have a ton of fun with Phillip and not one challenge gets in the way. Ayla (AKA Sissy) is a huge One Direction fan and I mean bedroom walls plastered in posters and can give you nearly any random fact about One Direction that is known. Not just can, but will. A few weeks ago she began taking Phillip into her room and playing One Directions music videos on her TV. When it began Phillip would dance and loved getting the chance to hang out in his big sisters room. Quickly the dancing has turned into dancing and some singing along with the songs. Ayla absolutely loves that he does this with her and the feeling is mutual for Phillip. He even laughs when her favorite member of the band is goofy on the videos, which is even cooler in her eyes.

                The last few days Phillip has in fact figured out how to play One Direction videos on YouTube beginning first thing in the morning and it goes on all day long. If he is having a wandering around look of boredom, One Direction fixes it. If he is growing frustrated for whatever reason, One Direction fixes it. What we have around here is One Direction madness happening! 

                The interesting part is I am thrilled to see it happening in every way. It’s a bond between them and it brings nothing but smiles and fun. There is not one challenge that comes from having this in common and in fact I would even say it has made the relationship just a bit stronger.  They seem to be spending a bit more times together and big sister is happy to watch him for a short time considering they can have a One Direction marathon and it’s nothing but fun. It is also very cool to hear and see Phillip singing along or at least giving it his best shot. I have only hear him sing three songs and all of three of them began a short time ago. First three years he has never really made attempts at singing like many kids do. As a matter of fact even being sung to was not really his thing, unless it was Twinkle Twinkle Little Star at bedtime and that was the only song he paid much attention to.

                When I hear that little voice trying to yell out crazy crazy crazy or yeah yeahs from his sisters room along with thumping on the floor and laughter it is a truly awesome thing to hear. I have been waiting for it; in fact I think we all have. It took a sibling full of love opening the door and turning on the music to begin this One Direction madness and thank God for it!

Find your stinky old book!

                 When I saw this picture it made me think of two things, one being how plugged in our society is and two being what parent’s are able to do to get away even if it’s just for a moment. I collect old books and I mean really old. Early 1900’s or earlier are my favorite finds and this is something I have liked to do but only recently started doing more of it. I can’t count how many times I have gone to the grocery store alone and some will say to me, “at you got to get away”. Just to clear this up, getting away and being away are two different things. Leaving alone to buy diapers or a gallon of milk is being away. Getting away is something that clears your mind.

                Getting away is taking time to be alone with yourself and being reminded of whom you are, what you enjoy, aside from being a parent. I love being a mom but eventually I do start to wonder if the only thing I will ever do again is laundry, dishes, house cleaning, and managing three kids. Aside from autism all three of my kids have very challenging personalities none of which are anything like the other. Spending day after day trying to keep those minds balanced and out of trouble can get exhausting. Not exhausting in a way I need to sleep but in a way I need to give my own mind some personal attention. So, I jump in the van and go on a short quick book hunt.

My kids think I am nuts because I come home with stinky old books and a smile on my face but to me those stinky old books are what keeps me from losing myself keeping up with everyone else. If you lose yourself your really not much good for the people around you so I need those books. That short treasure hunt makes me happy and it’s necessary for my own soul.

It is very hard to find something that gives you soul food when you have a child with autism simply because it is very hard to get away and when you do it can be short lived. Very often it’s being away that is still gravitating around others. Not a bad thing because that’s what a parent does but everyone needs that one thing that is for their own good. No matter what that might be.

Years ago I was in the worst place of my life and I had all the time in the world to myself but my mind was never on me. My dad’s childhood home was being rented in Montana and I traveled over to clean up for the next renter. When I arrived the home was in need of a gutting and I was to stay in it for the trip. It was empty and smelled so bad I could hardly breathe with one bed left for me to rest my head on and stare at the walls.  I went out into the shed and found a book tucked back in a corner that had been missed for years because it was left there from the years my grandma still lived in the home. I have no idea how it was missed all those years but it was an Edgar Allen Poe book from the early 40’s so I grabbed it and went back into the empty house for the evening. I sat on that one bed trying not to breathe or touch anything for fear of what I might pick up from the filth and I read that book. From beginning to end and the entire time I forgot where I was. Forgot about the things in life that were challenging me and I was totally lost in a stinky old book left hidden in a corner for over ten years by the very women who taught me I could go anywhere in a book, my grandma. I did get a hotel for the rest of the stay so I could breathe clean air but I took that book with me.

             The point is everyone needs to find their stinky old book! Something that feeds or reinforces their soul and gives us that short escape customized for our own mind. Not just autism parents but all parents or just anyone who starts to feel a bit drained from the challenges of life. It might be something no one understands or something so small it isn’t clear why it puts on your face. We are living in a busy world that is completely plugged in and flowing with judgment no matter what you do. We can’t avoid any of it so find a way to escape it that is healthy for you. After all is said and done what’s healthy for you is healthy for the minds you’re trying to keep up with. The bonus is they will see you find your stinky old book and one day find their own hopefully. Being away is nice but getting away is good for your soul.

The dreaded tolerance test.

              Well today what’s on my mind is our approaching intake visit at the autism center we have been waiting for since our move. When we moved the center had just applied for state backing so any new cases had to be turned away until all the details of the change from private to state where finalized. It’s taken over three months so I was getting a little worried but we also do ok at home.  I know many kids the wait would be vital but we have never had the service to begin with and I am very blessed to be able to work with him at home. On that note I can’t teach all he needs to learn so we need this service no matter what.

                Last night my mind started moving and some things started to haunt me a bit after our experience in Montana. The email I received from the center triggered my worry just a bit because it said his appt would be from 10am to 1pm and I would only be needed the first 45 min. Your might be thinking, ok now you need let go a bit, and there some truth to that but it’s not the letting go that concerns me. I should be thrilled that I will get two hours to run free while my child is receiving therapy but I am not. Not yet anyway and hopefully soon after he begins I will feel that way.

                The experience we have had with therapies has gone just like this. Take him in, talk for a bit, try to quickly explain my very complicated to child to a stranger, and feel at ease we have help. Then the part of the therapy procedure begins and each time the very first thing they would do is test his tolerance level. This completely baffles me and has never made sense to me at all. Here you have a child who is shy of strangers, has a strict routine, and it very sensitive to change. He is already in a new atmosphere with new people trying to take in what is going on around him without becoming overwhelmed. Then the therapist decides it’s a good time to see how mad he gets when pushed? Not considering that autism is going to relate a first encounter with the feeling that comes with it. Meaning and maybe it’s just my son although I don’t think it is, he has just taken in your face and associated it with frustration. Not just a face but everything around him right down to the parking lot. The tolerance test is a form of sabotage to me because for one, it’s not necessary, and for two my child forgets nothing. I have been told this tactic is necessary and have argued it but in the end that necessary tactic has caused regression and fear. The therapist who shut the door on us and locked me out caused a problem at home for months. I could not shut a door with Phillip on the other side without him panicking. My son literally ran past me and out of the building when the door finally opened that day. The supervisor explained to me the procedure and testing his tolerance was part of it but that encounter tested my tolerance as well. To them he was a little boy who just wanted to leave but to me he was a little boy who wasn’t coming back.

                Phillip keeps a rolodex of life and I will give you an example. We have been to Grocery Outlet twice in 3 months. The first time I gave him a snack off the shelf and by some miracle he liked it and I got him to sit in the cart for maybe the second time since he could walk without a fight. Our first visit was over month ago and our second was a couple days ago. He went directly to the place we found that snack on the shelf and wanted to sit in the cart to eat it. He associated the store with a repeat of our last visit immediately. It took me a long time to see this about him but the first encounter with new places or faces determines his future actions and comfort level. He simply does not forget one single thing and I know this from watching carefully. Target is out of the question because our first trip to Target was a nightmare therefore every trip to Target is a nightmare. No triggers, he has just associated the atmosphere with the action and that’s it. I can’t do anything to change it at this point so we don’t go to Target. The moment we walk in the door his mind goes directly back to the first encounter.

                A success is a big deal when it comes to first encounters for him because he won’t forget. He will 99% of time repeat. I can only hope and won’t know until the day comes, his first encounter doesn’t involve the tolerance test. I can hope when I speak they will listen and take my word on what will cause a problem. I think many times some of the therapists don’t give a parent the credit they deserve and have to see for themselves. Not good for the autistic mind because I don’t think they forget one single thing and that can be a trigger itself. This photographic memory could be a big part in why so many parents are forced to home school or why some therapists just can’t get through. The atmosphere is very much related to association and that can trigger positive reaction or negative. Either way there will be a reaction and positive is what opens the door to the progress we like to see. For the love of God, “testing” anyone’s tolerance is not a good idea, just listen to the parents because they know there child better than anyone.

My minivan doesn't have an awareness magnet and this is why.

                I was in town yesterday and a van passed by me with an autism awareness magnet on the back. Later that day I came across an autism awareness t-shirt and the question was if people would wear it. 99% of those people would wear it and wanted a number of them for themselves. We see a lot of autism awareness items pop up for sale to support the cause and we like to think the money goes back into autism research. Let’s hope that is exactly what happens and it’s helping families.

                I don’t buy these things and I don’t adorn a magnet on the back of my minivan and this is why. My son is one of the lucky kids who doesn’t face debilitating physical struggles and at this point he can do some interacting with people, not your typical interacting but regardless many kids can’t even do that with their own family members. Most of his struggle is based on transitions, routine, and becoming overwhelmed. A stranger may be totally unaware he struggles at all within the first few minutes of being around him. Give it a little more time and it becomes clear at some point. This is the very reason I don’t label him as autistic with autism awareness gear. If a stranger, at first, is unaware he is autistic then their perception of autism is not what we know it to be, in some cases.

                They might giggle at him and then try talking to him and eventually they give me a look as if they are wondering why his speech is not there or why is he at top speed with total lack of attention. Why is that mother not demanding her child sit still and control himself like a child is expected, is the look I get all the time. Eventually if we have that small chance of talking, there comes a chance to tell them he is autistic and sometimes the reaction is surprise. There perception of autism is not what they thought and to me that is a form of awareness that is important.

                If I was chasing him around sporting autism gear people might look at him and see autism before they see him. It is part of him and controls much of our lives but I don’t want people to overlook him looking for his autism. A sad reality is many people might not even try to interact with him if they knew he was autistic immediately. I don’t like that thought but it is a real one and many people would be afraid of how to approach him. They might be afraid of doing something wrong or how he will react to them so they would simply avoid it altogether. Those people are exactly who need an autism sneak attack so to speak. A quick lesson they didn’t see coming and didn’t know they were in the middle of. Maybe they up end walking away with a new perception or of course they could walk away thinking I am a lazy mom who just isn’t in control. Either way, they get a dose of autism they didn’t expect and that’s a good thing.

                There is another reason I don’t throw his autism diagnosis out for all to see in public and that is simply for him. I want him to feel pride in everything he is but I don’t want him to feel autism is everything he is. He is Phillip first and he needs to understand that, just as he needs to understand how to cope with his difference. I don’t want him to be so focused on being autistic as he grows up that he can’t focus on being Phillip. I don’t want him becoming so lost in autism that it becomes his greatest struggle in life. The experiences life will throw at us are struggle enough without thinking we have a difference that will hold us back. On that note he knows and will always know he is autistic but I don’t want him to believe it is a handicap because for him it is an element of life he can manage. The world will view him as handicap but I don’t want him to, even if that is reality.

                Now I want to add he is extremely lucky because so many families are not able to take this approach and so many children cannot and will not be able to manage the difference. When these autism sneak attacks happen I am able to explain that to people because it is also very important. I get a chance to spread a little awareness and sometimes I get to hear what people know about autism. Some people will jump right to Einstein, which gives me a giggle, and some people might apologize to me which  does not make me giggle at all. I might get an earful about a relative or a neighbor’s child and sometimes I am asked if I have ever read a Jenny McCarthy book...yikes on that one. I have read a Jenny McCarthy book and it consisted of her asking questions and doctor answering them. I found some informative health information but I did wonder how someone gets the title of an author by asking a series of questions. I have been asked if I have seen the movie Rain Man and I have decided to start saying no I have not just for fun. No matter what direction the conversation takes I am happy to be able to have that conversation with someone who may have avoided it to begin with. It is an important step in the process of awareness.

Push it real good! (potty subject warning)

                We have been working on potty training around here for the last week and the funny thing is I am not the one who started this mission. I learned my lesson long ago I was basically powerless in this process after I helped him get over his fear of sitting on the potty.  That small step was about as far as I was going to get with the process and we put the brakes on the mission before I caused to much damage for a future try at it.

                For the past week Phillip has been taking it upon himself to master every step of the process according to what he has learned from videos, apps, and hopefully me. He uses the word power when he has to go potty or has already gone. Verbal communication! The one thing I knew we needed to make any progress at all. He goes into the bathroom, puts the seat on the potty, sits, even uses toilet paper properly, washes his hands with a bit of help and turns off the light before he leaves the bathroom. An impressive step, because he might be the only one in the house who actually makes sure to do that. He has a mirror on the wall across from the potty to entertain himself and it works. He loves making faces at himself while he sits. I did notice an app he watched stated the toilet “takes” the potty away so I had to correct it and tell him he has to “give” it to the toilet. Seems silly but for the way his mind works it’s actually is an important correction.

                The last 5 or 6 days I have spent at least half of my day sitting on the bathroom floor rooting him on. I have sung Wheels on the bus hundreds of times and any other form of entertainment I could think of. He actually will sit for a very long period of time and I have had to keep both of us from getting bored waiting for the magic to happen. Last night I even resorted to playing Push It by Salt N Pepa but that actually just turned into fun and he had to get off the potty to dance. A nice break that gave us both a good laugh.

                At this point there is absolutely nothing else I can do to entertain, motivate, and inspire. Why is it he has the entire process down and nothing is happening? Change is holding him back, so to speak. Learning the process is not really change, it’s more like adding to routine and it has in fact become routine at this point. The change is the part he has to transition out of the diaper he has grown used to for 3.5 years to the toilet. The feeling change and his mind must grasp that going potty a different way is ok to do. You see we can sit in the bathroom all day and the moment we put a diaper on he goes potty. He actually will NOT go potty without one on and someone might think I should just refuse to put one on him. If I do that he will hold it to the point of physical pain and we have been through that before. He held it so long he couldn’t walk once and I refuse to see him in that state or put him in that state again. I tried that the first time around when I didn’t fully understand how difficult it was going to be for him to transition. I get it now and I refuse to force him onto the change because he wants to make it happen therefore he will. He wants it so bad he took it upon himself to learn every step of the process. Patience is going to pay off with this situation and allowing him to find a way. At this point it’s all up to him and making that transition. I have no doubt that he will make that transition but it’s going to take many days, possibly months, or even worst case scenario years of sitting on that bathroom floor rooting him on. If I try to force him or demand the change we go right back to no progress at all. He will regress and the tricky about regression is that also takes days, months, or possibly years to overcome. Not a risk I am willing to take.

                For now I am extremely proud him once again for doing more than we were told he might do. I have to wonder in all those meetings and verbal statements from people saying what he won’t be capable of that maybe he was listening much more than anyone felt he was. To them he was the autistic boy not paying attention but I think he was to every single word spoken.  He has been fighting very hard to prove them all wrong and in one year has been doing exactly that. If in one year he has blasted all those can’t do’s to pieces I can only imagine how much more he has to show us in the years to come. That is if I can manage to work with his mind and not against it.

               

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

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

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

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

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

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

               

Is cyber space stealing our ability to empathize?

                Every single day I encounter people being rude and nasty to each other. Typically that’s online because without a human standing in front of us there is no feelings attached for some people. Someone is always offended or wants to force a point of view on someone else. It is constant and it really never stops. People disagree and then the insults begin and more often than not, the insults are cruel and unnecessary. I can’t even figure out why it continues at that point because then it just turns into a battle of who can insult the other more.

                You can actually be nice as pie online and someone somewhere who doesn’t agree with you will tear you apart for fun. This concerns me a lot because it speaks volumes about human nature and how far people will take things if the empathy of a person standing in front them doesn’t exist. In my opinion this is actually dangerous to kids growing up in this world who use technology to do most of their communication. There are words but no face to see or feelings to read. We can take a sentence and read it however we want to, then we can translate feeling however we want to because there is no tone of voice attached. Even kids without autism are learning how to interact with each other as they grow up and keeping a good eye on technology is very important to keep the thought of humans and feelings alive.

                I offended someone last night with my opinion, not an uncommon opinion by the way but not a welcome one to this person and many more after that. Actually I offended more than one person yesterday with the subject of Christianity and modesty. I did not set out in any way to offend on either subject but it happened so easily it was like I couldn’t avoid it unless I remained silent. That is not how people are supposed to be interacting with each other on a daily basis. It’s not healthy period.  If I was to have said the same exact thing I typed face to face, I know the reaction would have been different. They would have heard my tone, been looking at a human being, and known I wasn’t out to offend. Maybe we would have picked each other’s brains a little more because when you are in someone’s presence you tend to care more and feel more. At least that’s idea.

                This problem is affecting everyone because the internet connects us all. Even if we aren’t in the middle of a bashing we all come across one no matter what. It’s a problem for kids learning to relate to others with or without autism but adults are affected as well. When we read a comment online we can’t see social cues so in a way we are all getting a dose of autism with this kind of interaction. Difficulty understanding each other and things are taken very literally, leading to frustration. The difference is I don’t think autism leads to cruelty when the frustration hits. Here are some ironic differences in our world between someone affected by autism and someone who is not. Not all of this applies to everyone but I know everyone has seen it in action, especially online where it has taken over.

                Some with autism need technology to communicate while others chose it. An autistic mind will fight to understand others while some people fight refusing to try to understand. Autism wants to know what those social cues are while others have the ability to read them and ignore it. Autism typically wants to make sense of things while others chose not to. People tend to think autism lacks empathy, totally incorrect by the way, while others chose to not use it. Autism is trying to live in a world without offending or being offended while others are setting out to offend and get offended.

                My point is people take advantage of the abilities they have and how lucky they are to have them. Don’t be one of those people if you can help it. If you’re looking at a computer screen always try to remember there is a human being on the other end. A computer is a gateway to each other and somewhere in cyber space the elements we need to relate to each other get lost. I think we could use a lesson from autism and fight to hang on to things that matter and help us attempt to understand each other instead of tossing it out into cyber space to get lost. Ignoring the fact we have the ability in the first place.

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

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

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

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

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

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

"Understanding" Valentine's Day...is it really that important?

               I wanted to write a blog today bout explaining Valentine’s Day to a child with Autism or fun ideas for the day so skimmed a few articles. What I found was articles that stated kids with autism don’t understand the relationship side of Valentine’s Day and that idea is foreign to them. I am not listing the articles because it was just a quick look at a few and my first thought was why do so many people assume this? The answer to that is easy and it’s because of the communication barriers with some children. Then I thought why would I even write about understanding the holiday in the first place?

                If we were to ask a verbal autistic adult if they understand Valentine’s Day I am sure we would find that they do and they completely understand it is related to relationships. In fact we would find many rounding up a gift for someone they love. Or wishing someone they love would surprise them with a Valentine’s Day gift.

                Just because an autistic child or non verbal adult doesn’t show an understanding of the Holiday doesn’t mean they don’t get it or want to be included in the fun. The thought that autism doesn’t understand love or that it is foreign is crazy. We might find some logic that Valentine’s Day is kind of silly considering there are 364 more other days completely worthy of celebrating love but we all know that and yes even autistics know that. In fact the logic of autism would make that concept even easier to understand. Children don’t always grasp the entire meaning of a holiday, autism or not, that understanding comes with time, age, and creating tradition. Yes, just like all kids learn.

                How am I approaching Valentine’s Day with my son? Just like I do with my older kids, with no thought to if he understands or not. All three will get something special and all three treated the same. I don’t do anything different in regard to my son and holidays other than put a tad more thought into a gift because it is harder to get him to engage in a present, it has to be something that grabs him and I don’t want to waste money on something that doesn’t.  That’s it! Maybe he won’t show an understanding, in fact I know he won’t but to assume he doesn’t is unfair and a bit strange to me no matter what day it is. The only way a tradition is understood is the simple fact it is a tradition in the first place.

                I personally don’t care much for Valentine’s Day and think it is too commercialized anymore. I remember when I was a kid and my mom would leave a nice card and a small chocolate heart on the table in the morning. As a very young child did I understand completely what Valentine’s Day was all about? No, all I knew was it was the day my mom gave us chocolate in the morning and that was not a typical day. It was a day something special happened and those were awesome days!  Did I read every Valentine I received at school? No, but I sure tore into the candy attached to it like it would be year before I saw it again.

                I think sometimes we think too much about making sure autism understands when really if we just approach it as a special day that is enough. None of my kids are going to be sitting down and considering the meaning of Valentine’s Day or pondering love for 24 hours. The older kids will be waiting for something a not so typical day brings and Phillip will be learning that concept so it becomes tradition. He knows love because he is little boy who was born with it and maybe he will get a chocolate heart (not for breakfast) to symbolize a not so typical day. In fact no he won’t get chocolate because I do want the day to be sugar rush free for my own selfish reasons but he will get something. Something that tells him today is different and that’s that. I am not worried one bit if he understands the meaning or history behind the day. After all he understands much more already than most people give him credit for. Approach the day like it’s just a bit different and have some fun because that is all it takes to establish the tradition of a holiday, even if the reaction is not what is expected. I don’t recall even ever telling my mom that I had no idea how much she loved me and how the card she spent time picking out moved me. I just remember thinking…Chocolate!

                On that note, I think 35 years later I need to say thank you mom! For letting us have chocolate first thing in the morning every year without fail. I didn’t care about the meaning of Valentine’s Day but I did know mom sure loved us making sure to establish the tradition and making sure it was not just a typical day. I love you mom and it has absolutely nothing to do with chocolate! It didn’t 30 years ago either, that was just a perk of the day I looked forward to every year.

The evolution of an autism mom.

              We are coming up on a year since our son was diagnosed with Autism. I can think back to even before that day to so many ways I have evolved as a parent, person, and even my opinions and get a little overwhelmed myself to all the changes. I began to learn about autism shortly after my son regressed with that dang vaccine pile up he received even though it was never something mentioned. I learned so much I knew nothing about and started awareness before he was diagnosed. Maybe because I saw it coming and because I was blown away by how clueless I was and the struggles people face.

                At first I felt I was raising awareness for others just because I cared or at least that’s what I told myself while my son stopped talking and interacting. This was my not us faze of the evolution and I was still trying to convince myself he was going to just snap out of it like everyone was telling me. I could see it and I knew it after, all why would I spend hours researching autism if a part of me didn’t know the truth. I like to think I am a good person but lack of sleep and anxiety wasn’t something I would have invited into my life if I didn’t know I would be affected.

                Then came reality and knowing this was not just going away. The reality of taking him to the doctor and bursting into tears when someone else finally said the word autism to me. I had been carrying that word around in my mind for months and it was now out in the open. That was when life kicked me in the gut hard enough to get my full attention. Yet even then we held off on getting him diagnosed and looking back I have no idea why we still tried to deny it. Just a little more time is all he needs was the thought and what a silly one because really we where wasting time hoping it would do us a favor. This was the Us but Not Yet stage of the evolution.

                Jump forward to the diagnosis and we are now in the, ok it’s happened to use stage. All the paperwork and new faces along with therapists put us in the mind set we had an army of help for our son. Big sigh of relief that all these wonderful people were going to help us move forward right? Not exactly because in all of that I was slowly starting to question these people and if they really knew what they were doing. The day came our always hours late advocate came over with visual aids and a special education timer. That was also the day I explained to him I was locked out of a speech therapy room only to be met with a nice inspirational talk about how I am mourning my son. How I bought a ticket for Paris and landed in Holland which is nice but not as nice. That was the evolution of a mad mom. The day I got angry and wanted to ask why in hell he thinks I am not in Paris because I didn’t agree. What I heard from that story was, you are disappointed in your child and that literally pissed me off.

                Now we are in the nothing caused his autism, he was just born different stage and although I know now that may not be completely true or have accepted it, at the time I was desperate to hang on to that theory. Maybe because it’s a comfortable one and it took any blame off of me for possibly doing something that pulled the trigger. We are in Paris and the rest of you are in Holland missing all the awesome sites was how I felt and still do to this day. That is one part of the evolution that has not changed and never will. I was trying to convince myself his difference was purely genetic even though there was no evidence of any autism genetics to convince me of that. I even grew a little upset with other people when they would mention causes or vaccines to me. That part is kind of interesting because when someone mentioned vaccines to me I never spoke of the 6 he received that day but the image of it happening always flashed into my mind. Denial at its finest is what I was going through but not complete denial or I would have mentioned that day with pride.

                I then moved on to the wait just a dang minute faze of the evolution. No autism history and although the two smart people get together and create autism theory was a nice one, it was such an ignorant theory I couldn’t settle. We are now in the research like a crazy person and discovery stage. I think looking back I hated this one the most simply because I discovered so many things that are potential dangers to our children and us in nearly everything we eat, touch, and breathe. I also discovered just how entirely ignorant I was even if none of those things had anything to do with autism. I started to think deeper about the rate of autism growing so quickly and how that could possibly be happening so fast to so many. The theories I was told were once again comfortable to hear like doctors being more aware or simple genetics.

                Question everything phase and question it carefully until I felt I understood. More aware doctors didn’t fly because autism isn’t something you can miss. A non verbal child that won’t allow touch or eye contact is a hard thing to overlook. If that’s the case and it was always around with doctors overlooking it then what happened to all the autistics from the past who never received any help? Did 1 in 88 just grow up and be fine without all the necessary treatments we are told an autistic can’t live without? Where did they all go to if that’s the case? If it is simple genetics or not so simple, why are so many of us carrying these genetics and where did they come? Genetics is a hard thing to accept when there is zero genetic history on either side of the gene pool. Genetics are clearly involved but where are the genes coming from?

                On to the there is no answers and it’s time to move on from it all stage. This is when I just knew the answers weren’t going to come in this lifetime and accepted we would never find it no matter how autism came along. The evolution of knowing all the answers to anything I question are right in front of me and as a mother I can with confidence say he will be just fine and I am doing an awesome job at making sure of that. I don’t read articles like I used to looking for clues but now it’s just with interest. I don’t deny the vaccines may have collided with his body in a bad way but I also don’t think vaccines are a bad thing. I don’t think my son’s autism is purely genetic but at the same I know genetics are involved. I won’t stop awareness because we know the numbers are going up and all these kiddos need good programs and good recourses right along with understanding. I m grateful for the evolution over the past year because no one likes to be ignorant, especially me.

                What I am most grateful for is my son, my family, and that all those people who felt we had landed in Holland instead of Paris didn’t get on the same plane we did. Paris is one of the most interesting places to be and I can imagine Holland is a bit disappointing for those who missed our trip to Paris. There is something new and amazing around every corner. Maybe Paris isn’t what we expected but that’s simply because we skipped the typical tour routes most people take and hit our adventure without a map. Maps are created for those who want to follow, not lead and Phillip is leading me everywhere we need to go to get the most out of our adventure.

               

Actions speak extremely loud!

            

                Today was a boring Sunday and the weather wasn’t good enough to venture out much. I decided to go to the craft store and stock up on paint supplies for days just like today. My son won’t paint, finger paint anyway, because the feeling of paint on his hands is not a welcome feeling at all. I had intended on buying brushes but true to form the one item I forgot to get was paint brushes so finger painting was going to have to be the way of the day.

                I bought a ton of paint in every color and pulled out the muffin tin so he has easy access to it. Cleared the dining room floor and let him have at it. This is the part you imagine a three year old diving in and creating a huge mess but not this three year old. He carefully put just a dab on the tip of his finger and frantically looked for something to wipe it off with. I always want him to dive in but I know he won’t so I dove in instead hoping he would see there is no harm done and join me. We began with trees and flowers like most children like to see and he quickly became bored with my finger painting lack of creativity. It was getting hard to get his attention and slowly it was beginning to turn into me alone in the dining room covered in finger paint with Phillip wandering around looking for something better to do.

                That was when I knew I needed to change my approach. I was going with typical painting and his not so typical mind could have cared less.  It was time to turn on the classical music because he loves it and pulls in his busy mind. It was time to say goodbye to trees and flowers and I was more than happy with changing the approach because I was boring myself. I then proceeded to just make a mess and soon Phillip was standing over me watching with interest, walking around the picture and getting closer to the paint. Soon he sat down and started to touch the paint, carefully. Then he began to help a bit and didn’t appear to be too bothered by the paint on his hands. He did have a towel nearby to clean it off if he needed to and he did use it when the mess factor was too much. By the time we ran out of room on the paper his hands were covered in paint, his face, his arms, and he even had some in his armpit!

                I turned the music off and cleaned my owns hands off and this was when he realized what had just happened. The light went on that he was plastered in paint and did not like it one bit so up to the bath to ease his mood. I put that picture up to dry and the rest of the evening he has spent looking at our project and has gotten the picture down, gathering up the paints to do it again or add to it.

                My point to this story is, I had to stop what I was doing and try something that would pull him in. I had to help him forget about his worry of getting messy and focus on the chaos of the project. I am not sure without the chaos of it he would have ever paid attention. The music was a great help to distract him while he was watching and typically he loves classical to relax. I can relate to this part of how his mind works and I often see kids struggle in school because of boredom with the approach. The one thing I know my son and I have in common is a busy mind and if he gets bored frustration sets in. Or he simply walks away unfazed like when the project began. There has to be a way to be pulled in to forget the things that might cause a road block to the task. One of the biggest mistakes people make is underestimating just how busy an autistic mind is. With no words or very little it can be difficult to know but actions speak extremely loud.

                I have heard a few times from therapists the words “he must learn” and that is true he must but when I hear these words it is commonly in regard to learning to do what other kids his age will be doing. My question in the back of my mind is always, what if he doesn’t learn the way he is going to be taught?

                 

 

Well behaved kids discount, and a ton of judgment.

http://www.komonews.com/news/local/discount-for-families-with-well-behaved-kids-190466431.html

               This is a story that came up on our late night local news last night and typically I skip the news these days but this one caught my attention. At first I felt a bit irritated but I wasn’t sure if I was just feeling sorry for myself or maybe my feelings were a bit more legit than I was giving them credit for. You see we don’t eat at sit down restaurants if it can be avoided. There have been a few times we have and it is a constant struggle to keep our son in one place. I would never say he is bad but that doesn’t mean the opinion around us sees it the same way.

                If you read many of the comments attached to the article you will find the judgment parents face on this issue. You will see a mention of a charge for bratty kids and how well behaved kids at a restaurant is a sign of a “good parent” and so many more comments that cause a stir in my mind. I know people judge quickly when my son runs or can’t seem to be still for a short time but the thought people could think a parent who faces this struggle is not a good parent makes my stomach actually hurt with sadness. If being a good parent consists of making sure everyone else in the room is undisturbed, well then why am I trying so hard to raise kids who have morals, understanding, individual thought, care, a sense of others and the ability to be happy?  Apparently I have been killing myself to raise my children to best of my ability when all it really takes is to not bother anyone. Who knew!

                It’s nice of the restaurant to have given the parents something to smile about and proud of no doubt about it, but at the same time how exactly does one earn a well behaved discount? Maybe I bring my son in for a try at a sit down meal and he makes it for a bit but the food has taken forever to get there, huge problem by the way with a child who has extreme energy. Maybe he is beginning to climb out of his seat to explore because that is a given no matter what and one of us has to wrestle him outside just so the other person can pretend to enjoy the meal, possibly left at the table alone. I could create a ton of scenarios that people would see as disqualified but sometimes just getting in and out without a meltdown is actually being well behaved and a success.

                I am going to climb out of the classy bubble I try to stay in today and say to those who think they know what a good parent is, you are narrow minded, foolish, rude, judgmental to an unhealthy level, and your head is to deeply implanted into your backside to see it. No parent on earth has such a perfect tactic towards parenting total strangers can see how good at it they are. Yes, parents find success but they had to battle through things that didn’t work to find it in the first place. Something has to occur in the form of a struggle to find something that works and in no way is that limited to children with autism. Autism parents just tend to face not so typical struggles and have to find not so typical tactics which take time, a lot of time. We have to be able to get through the door in the first place to see what needs help and let me tell you it could be the day a new challenge sets in while we are trying like hell to figure out the ones already in place.  What works for one child might not work at all for the next and considering 1in 88 children have autism that means 1 in 88 children might require a completely different approach to simply get through a meal.

                At first I felt eating at this restaurant was out of the question but now I am beginning to think a little dose of autism might be good for this establishment. Maybe we will venture out one day to eat there but you can be sure I will be printing this blog out and leaving it on the table when we do. Maybe we will even get the well behaved child discount, but I have my doubts no matter how well my child behaves. Even though there are people in this world with their head stuffed up there backside that are also people who are willing to help pull it out, that’s if they would like some help because I would have disturb them a bit to make that happen.

               

 

No Limits!

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

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

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

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

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

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

 

Depends on how you view accomplishments doesn't it?

               When my son was diagnosed his dad and I seemed to have different fears for him. Dad wondered if he would ever play sports and I wondered if he would be picked on. I think it’s safe to say both will happen but there things in life you want your children to experience. All of your children because they are the little and big things that make life the adventure it should be. I can say some things in life have opened my mind to what life is really about over the years so today I am making a list of the things I hope my children get to experience at some point simply because it makes being alive feel good and gives us the feeling we are blessed to live in the first place. Even some difficult challenges are reminders of what life is really about.

1.       Laughing with a best friend over nothing until your entire body hurts because that is a great feeling!

2.       Getting an award for an achievement you worked towards even if it’s not a world changing event, because it matters.

3.       Having one teacher who makes an impact in such a positive way you never forget it because that is what a great teacher should do.

4.       Knowing your family will never stop loving you no matter what because everyone needs a family who does this and that is what home is.

5.       Discovering a place in the world that gives you total peace, no matter where it might be, because a place like that clears you mind when you need it.

6.       Fall in love because it’s fun!

7.       Getting your heart broken because that means you loved in the first place and learning how to let go is important.

8.       Going to Disneyland because everyone should go to Disneyland once in life.

9.       Finding a great friendship in someone you have nearly nothing in common with because someone like that helps you grow.

10.   Fight for something because not fighting is not even an option. It’s to important.

11.   Being told you can’t and proving that you can because sometimes people are wrong when they say that to you. No matter how many people say it.

12.    Being lied to because in order to avoid doing that to others you have to know how it feels and not want to do it, although you might anyway.

13.   Forgiving but also understand it’s ok to put limits on people who seem to require it more than necessary. See number 7.

14.   If you must hit rock bottom, don’t hit to hard because you have to be able to get back up and apply to life what you weren’t before you hit it.

15.   Find something you love to do and use it! If you don’t you will wish you had one day.

16.   Make mistakes because they are impossible to avoid.

17.   Challenge people who are wrong because you might be the only one who will, at first.

18.   Find cool things about people because almost everyone has something cool to offer.

19.   Say no to drugs because no one should muck up a beautiful mind with something ugly. The people who want to muck your mind are the ones almost in 18 I was talking about.

20.   Last but not least view life as totally unpredictable. Some things you can control and plan but other things just come at you and some of those things remind you what being alive is all about.

 

I like to think all three of my kids will experience most of these things regardless of any differences or labels and I could add so much more but I don't want to add boring people to death to my list.  My two older kids are already experiencing some of this and they are off to Disneyland next weekend with grandma. Phillip and I will stay home as it’s not quite his turn yet but one day it will be. I have no doubt one day all three of them will have a turn at the majority of the list above. Accomplishments are important and a big part of autism is measuring accomplishments, then again it really depends on just exactly how you view accomplishments in a lifetime doesn’t it.