1 in 50 causing some debate

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

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

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

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

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

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

              

 

                 

One of my biggest concerns for him.

               I worry about something with my son all the time and it’s not routine, eating habits, potty training, or being different. It’s how he is going to take in the world as he gets older socially. I am not autistic but you could say I have some social handicaps, in fact we all do. I have a difficult time understanding that people will do bad things. I know they will do bad things but I never expect it because I can’t wrap my mind around what makes people treat each other the way they do. I know right and wrong and for some reason I expect everyone else to understand it as I do. I think we all can relate to that in some way at some point if we reflect on life.

                Here is where my worry comes in with him. Even though I expect people to treat others right I know when someone is possibly dishonest, out for themselves, or just not being very nice. I can gage that even though sometimes I have completely failed to see it right away, I still have the ability to see it. My concern for him is he will not have that ability at all.  He is little but even at three years old if another child is not very nice; he has absolutely no grasp on it. I have seen it play out with other kids. A child at a play ground or at the mall might push him and he is just happy to be there. He might keep a bit of a distance in regard to being overwhelmed or avoiding being touched but the distance doesn’t have anything to do with the social side of what’s happening.

                I remember a day at the school playground in Montana. I stood pretty far away and just watched him interact with a couple of other kids his age. One little girl was in a mood that day and Phillip was going to follow her. He just wanted to play and there was someone his size to play with, when all of sudden that little girl turned and yelled at him for following her and she was not very nice about it at all. Most kids would see that and back off but Phillip laughed, smiled and danced around excited that she responded to him standing there. That was actually the moment I realized he has no ability to see what just happened and it scared me like nothing else autism has thrown our way.  Going through an entire life not being able to gage other people is a very scary thought. He would be torn apart in a mainstream school environment just because he lacks ability to gage others.

                I have had people say to me he will learn and maybe grow out of that but when I watch him interact with other kids there is no sign of him growing out of it at this point. It’s taken this long for him to say a simple hello to another child but at the same time he has been saying hello to all of us and himself in the mirror. A very simple social skill he is trying to like heck to figure out and right now he is just pleased he can say it. He isn’t saying it to be social, he says it because he is fighting to speak and that one word is a success in the battle. A battle so many other kids are fighting and aren’t even able to get that one word out. You take one day at a time and keep in mind that even the smallest success to others is enormous for him. You celebrate it like it’s a miracle because it is and at the end of the day you pray for one more.

Serving 100 in a school of 600? How high will that number go?

               Last week was registration night at the junior high and it was a chance for parents and kids to come in and investigate which electives to take for next year. Great event by the way for parents to get involved and kids to really understand what they could sign up for. My daughter had two classes in mind and I will say I was impressed with her choices. One was sign language and this class does count as a foreign language credit for college. Her second choice was peer tutor and this is being involved in the special needs program working side by side with the kids to get there work done. One of her new awesome friends had chosen the same classes and sometimes going in with a friend pushes that decision along so I was thrilled with the choices of classes and friends.

                We spent some time in the special needs room speaking with the teacher and my older son is already part of the peer tutor program. I will tell you my son wasn’t thrilled to be a part of the program and felt at the time I had requested it for him. Fear of the unknown or a discomfort with the differences was an issue for him so being a part of it was exactly what he needed. Odd he would feel that way when he lives in a home with autism but I think sometimes he forgets his little brother is in fact disabled. Being around him everyday has had a desensitized effect in regard to him being different. Not a bad thing at all but I think sometimes he doesn’t realize just how different little Phillip really is.

                The teacher asked my daughter if she had any experience with a special needs person and she told the teacher her little brother was autistic. The teacher was pleased to hear she might have someone in the room who understands some of the challenges that come their way. Then she asked my daughter if she knew any other students who had been a peer tutor and my daughter said her big brother was already in the program. The teachers jaw dropped, literally, and she said to us that my son had never mentioned to her he had a little brother with autism and she continued on to tell us my son was one of the best peer tutors she has ever had in her class. We were given an ear full on his level of patience and care for the students he works with and how well the kids respond to him. I couldn’t have been more proud at that moment but my son is a tricky young man so I knew he would never want me to know this. He has a reputation to uphold and I knew he would never admit to the amazing praise coming his way. I also know little sister has made a mission out of trying to do one better than her older brother so the praise was in fact inspiring another excellent peer tutor for the following year. To be clear my daughter would be excellent at it no matter what but knowing her brother was doing so good at it is just a bit more motivation for her and always has been.

                Spending time with people who are facing the daily challenges of autism is the best way to create the desensitized effect. That understanding that creates the patience and care that is needed so badly and I love that the school gives all the kids this opportunity. It has be hard to not be closely involved with your peers and having one of them sitting next to you during your day must bring a feeling of being part of what you see all around you. The teacher told us the kids react better to their peers than the teachers and I can imagine the reason is simply being closely involved with them student to student.  The program is not just an elective but also community service that carries over with the student right along with knowledge and discovering these kids are much more than what they see at first glance. I am very proud of both of my children for making an impact on their lives and their own lives because it’s an important one on both sides.

                To end it today I asked the teacher before we left just how many kids the program serves in regard to any kind of special needs and that included a learning disability and her answer was shocking. In a school of just over 600 kids her answer was around 100 kids. A program that is mostly suited for autism. What I forgot to ask her as the 100 was surprising to hear was how many did they served when she first began because she was in her retirement faze. I know that number would not have been nearly as high and I hope to get another chance to talk with her because I may not rest until I know. It becomes more and more clear to me as time goes by something is happening to our children and I know I am not the only one wondering what that something is and it’s not as simple as getting a fever while pregnant or a simple genetic difference. What it is doesn’t haunt me like it used to but often times it is difficult to ignore what we really do see happening at such an alarming rate.

Having control of your mind and senses is something we forget to be grateful for, until your an autism parent.

                Yesterday was full of way ups and way downs and all of us were exhausted from it. I knew this was potentially going to happen after the first appointment at the autism center. You wouldn’t think 3 hours of fun would throw everything off in such a drastic way, but it does. Something that is difficult for others to understand and the reason is the result of the changes happen at home. Only we see what comes from his mind trying to keep up.  I actually try to keep it that way if possible for good reason. It is a exhausting and painful thing to see happen.

                He woke yesterday with a pretty intense energy level and I could see things were building quickly to a hard day. We went to grandpas for a bit because he just loves his grandparent’s house. He did excellent while we were there. Listened to me while we walked around to the neighbor’s homes and he had plenty of room to run and keep running. When it was time to leave he nearly brought me tears of joy, the way up of the day. He grabbed grandpa’s shoes from the hallway and placed them in front of his feet then stood in front of him waiting. It was clear he intended to take his grandpa with him and considering he won’t retrieve his own shoes, this was a very big deal. Grandpa put his shoes on as he was heading outside anyway but what happened next blew my mind. Phillip reached up to him to be held. Also doesn’t seem like a big deal but when you are the only person he does this to, it is a very big deal and I was quietly throwing a huge celebration party in my head! Maybe he didn’t want to leave or maybe he wanted to take grandpa with him but why doesn’t matter as long as he did it.

                We left way up and arrived home to meet the way down. We played in the garage for a bit but when it came time to go into the house he completely lost his self control. The meltdown began and it did not stop for hours. Typically I can place him in the bedroom and it subsides but this one was not going to leave us so quickly. Eventually he allowed me to remove his clothes and he frantically communicated a desire to take a bath. I assume reaching for something to ease him but the bath ended with making things even worse. You see his mind wanted ease but the physical sensory overload was like a freight train collision. We had reached a point I could not touch him at all or his meltdown grew much worse. Even though I know better I tried because you still have that mom in you that wants to find a way to end the struggle. Eventually he lay down on the floor and I had to remain in the room without touching or speaking. If I tried to leave the room it pulled the trigger all over again. Maybe the sound of me moving or even sight of me moving caused a problem but part of it is his desire to feel better and mom is needed. Not moms touch or talk just mom’s presence. I can’t speak for every child with autism but I know when a down like this happens my son is afraid. Whatever is happening that he cannot control on his own is draining and frightening, physically and mentally.

                Eventually we both fell asleep and before I crashed with him I tried to move him onto the bed, but he woke and went right back to the floor in the corner. He woke hours later in a better place but I still had that fear it might surface again. I was not afraid of him but afraid for him during all of this. It’s a process educators and even people close to a child do not understand. I know the routine change and sleep schedule was the main trigger so I knew this was a possibility but many people do not understand with autism the smallest changes can rock an entire world. They don’t understand being overwhelmed is not just mental but physical as well. The mind can’t take one more ounce of processing and the senses seem to go into complete overdrive. The mind crashes and all of those senses that take in sound, smell, sight, and touch are can’t work to get into the mind at an even flow. Patience is the only way out and understanding what is happening can at least provide a bit of security. This is the process that makes some people believe autistic children are bad but the reality of this process is a child is in a battle with themselves. Imagine this feeling and imagine you can’t explain it to anyone around you. Now imagine being punished for it. Having control over our minds and senses is something we forget to be grateful for as we go about life, until your autism parent that is.

               

Rountine change and in good hands.

               Routine completely changed today as it was our first day of many to come at the Olympic Peninsula Autism Center. The long wait is over and the intake is complete. I was a bit worried this morning when my son wasn’t adjusting to the routine change with ease. He was in crisis mode and extremely clingy, but the clingy part was actually good because he was still allowing and wanting me to touch him. If he reached the point I could not touch him, we would have been in big trouble.

                We left a bit early to turn in paperwork and spent 20 min. in the main lobby, which was a good thing also because Phillip was overwhelmed and appeared to right on the edge. He stood in the corner looking around with great caution and a bit of fear. He was also running on a completely empty belly since the routine change caused him to refuse breakfast and anything to drink. As we waited many other families began to stream in with their children. All ages, all races, and all different levels of the spectrum. This was extremely interesting to me to see but I was concerned about the chaos level in the state Phillip was already in. I will tell you as I sat and watched something did come into my mind and it was simply this, there is no way autism is purely genetic. I just couldn’t see how all of us that came in the door just flat out carried the same genetic trait. That thought almost seemed unrealistic to me while I was looking around at how everyone was so different and yet there for the same reasons. I was almost a bit overwhelmed myself taking it all in because even in Montana we were never exposed to anyone else with autism or other families. I was in a room full of people who knew all the things I had spent so much time trying to explain to others, and they understood.

                Soon we moved into a large room with toys and a trampoline with three therapists. One of the therapists and I stepped into a smaller room to do a bit more paperwork and I could still see my son. I answered questions and watched him play along with the other children. One child had already gone into a meltdown and I watched to see how Phillip would or even if he would react to it. He was completely unfazed and went about exploring. I also watched the therapists who really do work as a group and one on one at the same time with the kids. They followed the children and but did not in any way force behaviors or try to train them so to speak into behaving a certain way. There was not one hint of that tolerance test I we ran into in the past with other therapists. These people had no intent to test tolerance just to seek ability.  When the questions were done I felt very confident my son was in excellent hands and I snuck out of the building.

                There I was sitting in the minivan with the engine running and could see him through the window. Time to drive away but it was much harder than I thought it would be! I did it and even managed to fend off the tears before I left the parking lot. Why would I have to fight tears when he was finally in a place that will help him? That alone is one very good reason why and another is I have never simply just left Phillip in a new place with new faces, ever. It has never been an option because no matter what something had to be familiar. Many times I have left him with someone and known they do not entirely understand him but he is home so he alone will follow his routine and be ok. Even then he has always been very familiar with the faces around him. This was an entirely new event for both of us and knowing he was in the hands of people who spend their lives for this very purpose was a feeling that is almost impossible to describe.

                I spent an hour trying to figure out what to do with myself and wondering how he was doing, so I did head back a bit early. I wanted to be able to observe how they would interact him and I was just dying to see him. The best thing that could possibly happen was I would walk into the room without him even noticing I had returned and that is exactly how it turned out. Even when he did notice me sitting there he continued to play and show them his abilities. He was exhausted when we left and once we came home he flew right back into his daily routine. Soon we will have his set schedule and two things are priority to work on for him to work on, communication and learning to function in a preschool setting so he can begin school in the fall. At this very moment he has tucked himself in bed for a mid day nap as I expected and the future is looking very good!

Naturally good natured

               I came across a post this morning on Facebook that asked parents how they explain lying to their preschoolers. This one I had to check out and it wasn’t on an autism page. This topic has actually been on my mind lately and was very curious to see what other parents said. There were a lot of great answers that might help a 3 year old and up learn not to lie and some not great answers but all ages and a ton of parents with a lying battle on their hands.

                It’s common for small kids to begin that stage and hard to get a point across that it’s not ok. I did it as a kid and so did my brothers. The moment I knew my parents were going to take action for what I had done, I lied.  I lied as fast and as sloppy as ever to avoid punishment. I was never a good liar as a kid and I always felt horrible after I lied. Probably because my punishment was always stepped up for whatever I did and telling a sloppy lie on top of it.  Growing up in the 80’s didn’t offer any natural parenting websites for our parents to seek advice. They handled it the old fashioned way like all the other parents in the neighborhood. You felt the lie on your backside and you didn’t forget it.

                As we get older we feel the effects of a lie and we don’t just feel them we see how we impact others. We start to learn, hopefully, that lying doesn’t just come with consequences but it impacts our character. It impacts people around us and how they generally feel about being around us. We learn that a one lie is just a take off point for producing more lies and we also learn we don’t just affect the quality of our own life but the quality of others lives around us. If you’re paying attention you chose to treat the people around you like they deserve the truth because they are worth that much to you. You also chose to clear your own life of dishonesty because it’s just simply not worth it.

                So, now I will tell you my son has never lied.  I know he is not a big talker but he has actually never done anything that would call for a preschool lie. If he could talk just like all the other kids I don’t believe he would lie. His nature is just simply good and I can’t think of one time he was sneaky or naughty with reason enough to avoid truth. If someone were to ask me, “what is the naughtiest thing he has ever done?” I would draw a complete blank.  I don’t consider a meltdown at naughty and even though he is three and a half he has never done one dang thing that is bad. He used to eat dirt and I told him bad, but it was sensory related. He used to run way too far and way too fast, also autism related. Many things that some people would consider naughty are actually his mind figuring the out the world around him.

                Yesterday I thought he was being a bit naughty when I tried to leave grandpas and he was kicking and screaming, until I realized while we were pulling away we left his two small toys in the house he brought with him. Couldn’t tell me by the way so he reacted by crying and screaming. I stopped and ran in to get his toys and as soon as he had them he took a deep breath and cleared the tears from his face. He just never does anything I would say is bad or wrong that I have to step in and teach him a lesson. It truly never happens. It’s one the most awesome things about him and as much as I love it I also worry just a bit because the rest of the world is not this way. I pray he holds on to this part of himself and not just for my own parenting selfishness because he is young and I have no doubt he will give me some common challenges as time goes by. I pray he holds onto this for his own character and so the people in his life feel his quality and their own from knowing him. It is so rare to find people who are generally honest and good, they are like an endangered species.

                I don’t any advice for correcting a tiny fibber other than creating the knowledge it hurts the people you love because that really is the bottom line and I do think most kids do not set out to hurt people they love. Hopefully they just learn that is one of the worst feelings to put into your life and will work to avoid it.

Hit with a shoe and I needed it.

                Monday was not my friend and started literally facing difficulties before I even finished my first cup of coffee. I wasn’t happy, not one bit and I know over time when I am not happy my son feels it. We maintained our daily routine but not too far into it I was hit with a shoe. A very small shoe and a very light hit, more like sending a tiny message. When I turned my head a new word came out of his mouth while he was holding a shirt and pants...”ride”.

                When you have a child whose communication is sketchy and he tells you ride, you grab your keys and you go for a ride without hesitation. That is exactly what we did and drove over to grandpa’s house for a short visit. During that visit three more things happened and one happens from time to time but the others never. He grabbed a tall lamp and said “cool” while he investigated it and he will do this on occasion but not usually in front of anyone. The second thing he did was try to open the door and when it didn’t open he came over to me and said “go”. Directly communicating what he wanted to do. The third was also something that almost never happens. My dad’s dog was being a bit overly friendly and trying to get a good sniff of Phillip’s toys. I told Phillip to say “no, no, no” to the dog but typically I will tell him to say something and we go blank. That’s when Phillip looked at the dog and repeated “no, no, no.” with quite the stern look.

                All of those awesome moments in just a short time and he knew mom was not having a good morning. In fact mom was completely exhausted from the challenges being thrown into life that have nothing to do with autism at all. I was even dreading getting through the rest of the day with my sanity in check. I had really lost my positive outlook and felt like my face was being pulled down with weights. A smile was not going to come, not a real one anyway. I knew the outside forces had in fact won the day no matter how bad I didn’t want that to happen. The bad part was I could have prevented it by not engaging in the battle to begin with, lesson learned.

                I was at a loss for how to turn the day around, then a shoe hit me and a new word came out with enthusiasm. A shoe and a word that served as a reminder the day was still ours and it was only the beginning of the day. A reminder he had progress to show me and smiles to share and a tiny reminder that as much as he needs me, I need him.