Quiet Approach and Consistency Breaks Down the Barriers.

   Over the past two years I have paid very close attention to who my son bonds with and why. When everyone can seem overwhelming for one reason or another, I can only imagine what people might look like to him at times. Especially when he is already very little and everything must seem large and loud to him. I have watched him react to typical things people do around children and most of the time his reaction is not what people expect simply because he doesn't view everything the same way we do.

   An adult might walk into a room and in a loud enthusiastic tone standing tall, say hello to him. He then turns and puts distance between himself and that person. We might be in public and someone will speak to him randomly but he has never seen them before and that first introduction to people is a lot for him to take in. How they look to him, how they smell and yes he will react to a smell even if he isn't close, how they sound, and most of all how they approach him. That first ten seconds if interaction is much more to him than most people realize.

   When I realized this it was our first visit from an advocate in October of 2011 and it was the first time I saw him react to a stranger in an extremely positive way since autism came to be. The reason was she walked into the house quietly, she kept her voice low, and even though I had a living room full of furniture she chose to sit on the floor. My son came out of his room and approached her right away without any hint of being intimidated by her. At the end of our visit he was playing with her jewelry and was trying to make eye contact with her. Sometimes he will get right at eye level and tilt his head back to focus on another persons eyes but up until then I had never witnessed him doing this with anyone but our family he sees every day. The reason was simple, she created a comfort zone for him and when it happened I was reminded of how many people he had encountered that were just to much in that first ten seconds. Once I understood this I knew what to expect when he was around people because of how they approached him. I personally even made some adjustments at home to turn life down when he needed it.

   Many times this has been mistaken for my son not liking someone or not bonding with someone because they could not understand but at the same time consistency is a big pay off in his life. Even if someone overwhelms him at first the consistency of the person allows him to overcome that. He can get past all of the things that turn him away if he is constantly exposed to it and it breaks down that barrier for him. My teenager daughter has a friend who comes to our home nearly every day. I stress teenagers because teenagers are not quiet, they are the opposite as we all know. Recently my son has started to hug this friend without warning because he likes her and she is a consistent person in our home no matter how loud it gets and these hugs took months to happen.

   The way he chooses to acknowledge and show affection to people doesn't just happen right away. If we are spending a day with people he knows but has not consistently been around he might even come across as now being aware they are even there. He is aware and he knows them but the barrier is still there if they are not people who are in his life every day. This is also why when a new therapist works with him at the center it takes time for him to adjust to that person. It's why he is most comfortable with his siblings, therapists,  and is just now beginning to allow hugs from grandma and grandpa who are now consistent instead of a couple visits a year when we lived far away.

   Looking back to when we lived in Montana and I would tell my son grandma and grandpa were coming for visit, there was never a reaction from him like you would expect from a 3 year old about to see his far away grandparents. Even when they walked in the door he would often hide for bit but when the visits became closer together with a quiet approach he began to express himself. Now we leave the autism center and every single day consistently he asks to go see grandma and grandpa, although he doesn't always acknowledge them when we get there he will allow hugs and kisses and that is enormous progress.

Every single day of fighting leads to that very moment!

              Those little moments happen that you wish every single person who knows your child could be there to watch it unfold. That moment you see something happen that literally takes your breath away because you didn’t see it coming, you hoped but you really just hang on to that hope not totally sure when or how the next moment will come. You watch it happen and you feel a surge of joy rush right through you that you don’t want to end, ever. Most parents know this as a moment a child scores the winning goal, gets straight A’s at school, has a talent that shoots them to the top, or they just do something that clearly indicates they are going to excel in life in general.

                It’s a little different around here and although I believe my son will excel, shoot to the top, get good grades, and I haven’t given up the thought he could score a winning goal in whatever sport he enjoys, the moments are different from your typical milestone celebrations.  This morning we had a moment that took my breath away and I had to stand back and watch because I didn’t want to interrupt and possibly have it stop happening. We did our regular morning routine and headed out for the autism center. In the van I talked to him about having fun, working hard, and who he might have for a therapist today. When I do this he never responds and just watches the world go by with no expression or really even a hint he is listening to me, I just assume he is. He has had two therapists lately rotating with him and one he hasn’t seen since last week. He seems to feel about the same way about all of them and just walks in the door and heads up the stairs with whoever follows him. Today that was not the case and what happened blew my mind.

                Phillip walked up to the doors which are glass so he can see inside and all of the therapists were standing and waiting for the kids to arrive. He stopped in front of the door, bent down and looked through the glass and then the biggest smile ever took over his face. I am so used to him not expressing much feeling towards activities like this I was shocked and yes I stepped back to watch. Then we walked in and I assumed whatever had just happened was over and we would be back to business until the therapist he hadn’t seen since last week said hello to him and then the smile came right back to his face and didn’t leave. It was a moment I would relive over and over again because I told his therapist “o my he LOVES you and missed you!” and I wasn’t just saying it because I know he feels it like I have so many times in the past. This time he showed it and I would have given the world for everyone who knows how hard he fights to see it happen. Especially those who stepped away from our lives because they didn’t see that he was in there trying like to hell to get out. A moment like that feels just like the moment your child scores the winning goal in a very important game and this mama did NOT hold back the tears because every single day of fighting leads to that very moment.

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.

              

 

                 

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!

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.

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.