Reminded of abilites I wasn't using.

                It can be so easy to get discouraged on this autism journey. It doesn’t even have to be an event in life that is related to autism but when your focus is your child or children even events unrelated can cause some weak moments in life. They can make the days harder and take over your mind like a negativity virus that has to run its course. In the meantime just daily life gets to be a challenge, a bigger challenge. I have always said life gets hard but it never stays that way, it just simply can’t. Time doesn’t allow it. Even on our very worst day we have to know the good is coming because it is and time is going to restore your state of mind.

                Yesterday was one of those days time finally stepped in and restored my state of mind. The days have discouraged me and my focus has been mucked up by things totally unrelated to autism. The weather is getting nice and a day at the park was exactly what I needed to clear my head. Not just a day at the park but a day I watched miracles unfold all day long with my son. Tiny miracles rolled in one after another and yes we did hit a meltdown last night but I expected it after a long day of my son pushing back at autism. That can’t be easy for him to do because he has to tell autism…no.

                At the beach he would typically be so distracted he just can’t listen, but he did. Not just listened but looked when I pointed at things and followed when I asked. Maybe that doesn’t sound like a miracle but for his busy mind it is. We walked to the end of the pier and this was another miracle because he is afraid of heights and challenged it, right along with holding my hand. He rarely holds my hand for direction and every second he clung to it I wanted to cry tears of joy. At the end of pier I pointed at the play ground and told him “let’s go there”. He looked at it and that is exactly where he headed, another miracle because he can’t usually ignore what is right in front of him to look beyond it and direct himself.

                At the playground he fought the crowd of kids to stand in line and go down the spiral slide all by himself. Three miracles in that because all those kids would have normally been overwhelming, standing in line I have never seen him do, and that slide alone was a big victory. Thankfully all of the kids behind him seemed to see he needed just a bit more time to go down that slide and none of them pushed or hurried him, they just waited for him to go. After going down that slide over and over again he did begin to wander and he started to wander right into a girl who was going to take him out via swing set. I couldn’t get to him fast enough and another parent grabbed the swing and prevented the collision. Phillip of course just walked on through totally unaware but the other mom seemed to know exactly what provoked him to be so unaware and she was awesome about it.

                Next miracle he walked to the van which was pretty far away and held my hand again across the parking lot. Climbed into the van and did not protest one bit. The miracles continued on all day long, nonstop and one right after another. I watched him all day face those autism challenges and urges to be distracted and basically he said not today to those challenges. He found a way to push it back and take control and no he might not do this today or tomorrow but he did it and that’s all that matters. He has very little control and yet he found a way to grab it, all the while I have total control every day and wasn’t using it. One day of watching him showed me just how silly I have been allowing distractions and challenges to bring me down and I don’t have that element of autism working against me.

                Time, a flow of miracles and a three year old who can’t speak basically showed me I have been a silly woman who wasn’t using her ability to fight back against the things that had been discouraging me. It was a day of lessons for me and a day of success for him. Watching him take his mind and take on the world that normally causes him to struggle was a big wake up call for me in so many ways. I don’t have to fight like him and I still allowed silly things to invade my head and drag me down. I had forgotten and he reminded me I have an ability to say no to the negatives and focus on the quality of the days. It’s not that hard to do and yet I wasn’t doing it. Now….mom is back on track with a little help from a boy who reminds her what life is all about.

Actions speak louder than words and it's a way of life.

                 Yesterday we took a short trip to the local Bug Museum. A tiny little side of the road adventure with a ton of tiny little things inside to investigate. Once I was able to get my son inside the building and steer him away from the all of the new things to see in the parking lot I knew right away it was in fact the perfect stop to make for all the kids to enjoy. Not only were there thousands of bugs to investigate but reptiles as well with endless things to see.

                The attention span of my son goes in two directions it seems. He is either so focused it’s hard to get him to turn away or he doesn’t seem to focus at all and I end up working like crazy just to get him to look at something. He has taken on the habit of bringing a small toy with him when we leave the house lately and typically it’s a GI Joe or some kind of toy in similar size and he brought the toy in with him. We spent an hour or more at the museum and the awesome part was I didn’t have to keep much of an eye on him because of the way things were set up. It seemed they set it up perfectly for a touch and learn mind so we had a little freedom to relax.

                The front of the store was a gift shop and the back was the creepy crawly section and once all four of us were in the front of the store it was the chance to call it good and head out. Phillip was not completely ready to move his mind out of the building but he wasn’t protesting either. When I managed to get him near the front door I noticed he did not have his toy from home in his hand. In fact he didn’t have that toy in his hands the entire time we where there and I grew a bit worried. He would notice at some point it was lost and there were many other kids who had gone through the building. One of them might have picked it up and considering the building was full of tiny items the odds of finding it quickly didn’t look good. Now I have gotten him through the adventure completely calm and tolerant of the environment and I had managed to nearly get him out of the building easily and we had just hit a road block. We could leave and just forget the toy but the odds of him forgetting didn’t look good because he does not forget.

                I said to Phillip, “where is your toy?” knowing he wasn’t going to answer but when I said it he stopped immediately and quickly ran to the corner of the store. In a box full of little gel like squishy toy caterpillars he started to dig. Under those caterpillars he pulled out his toy, walked by the desk with a quiet bye and out to the van. He had placed hidden it in the box under the toys when we went into the building and did not forget where he placed it for safe keeping. He has done this a few times lately and I can only assume he won’t give to me to hold because he is fully aware I lose everything I touch. Strong possibility he trusts his own brain to remember more than mine and I can’t argue that one bit, smart move on his part really.

                I can say his focus is intense or not at all and many people would say his autism causes lack of attention in general but the system of placing the toy in a hidden place when we arrived and knowing where it was before we left proves otherwise doesn’t it. If we would have left without the toy he would have remembered before leaving the parking lot, I know because it’s happened before. He would have screaming out without the words to tell me why and I may have assumed he just didn’t want to leave yet. I would have forgotten the toy but he would have never forgotten it and could never have explained to me his toy was buried at the bug museum. So we left peacefully with no protest and no transition problem toy in hand and thank goodness no other child moved or took that toy, because that would have caused another problem altogether. His attention might be hard to grab and his focus is one way or another but his memory is beyond impressive and literally blows my mind. At the same time he is giving my own memory the work out it needs to keep up. He doesn’t have the words to tell me and the last time this happened I thought his screams were just in protest of leaving or a transition challenge. I have had to keep up with this because with autism actions speak louder than words that aren’t there. That old saying is not just a metaphor for us, it is truly a way of life.

A plan full of little details If I was to leave him for more than a few hours.

               I have never been away from my son for more than a few hours and never have I been away from him over night. He is getting older which should mean it will be easier to do but I have my doubts about that unless a strict schedule is followed and I am not even sure that will do the trick without the element of me. It’s very difficult to take him places and the thought of leaving him is also difficult to consider. On the other hand life is going to pass by and I am going to end up watching it pass if I don’t find a way to participate in it. I have friends I adore like sisters and some of them are having life events happen such as weddings that they want me to be there for and talk of weekend trips away with my ladies come up. Sometimes I inspire that talk because I want it so dang bad.

                I started thinking about the directions I would have to leave for my folks if I am to break away and it is much more detailed than just favorite foods or times of day to do things. So today I am going to give an example of the list or plan I would have to leave behind for whoever cared for him if I was on an adventure.

                To begin the day one of the most important things to start the day off right is to NOT raise a voice to say good morning. It must be said quietly or the trigger is pulled and it sets a not so nice tone. So often a child gets out of bed and someone yells “good morning!” with enthusiasm.  So the first step of the day is a cautious and quiet good morning to set the right tone. Then it’s off to breakfast and two waffles are put into the toaster then I make my coffee. He has milk with a probiotic and most of the time he does not want the milk until the waffles are done, cut up, with a small amount of syrup. The milk and the plate are put on the counter together. If the milk is offered to him ahead of time he might take it or he might get upset so best not to offer unless he reaches for it. Then the Ipad is set up next to the plate so he can watch a morning show of his choice with breakfast. Typically we sit together for this and I talk to him while I use the computer. That might not so important if I am not there for someone else to do of course but it is how the time is spent.

                We are off to laundry and he likes to unload the dryer for me. The clothes go on the floor and on the top of the dryer and there is no order but that is fine because he is helping so don’t mess with the help. This is also when dishes or vacuuming is done and he keeps himself busy but when I tell him I am going to take a shower he drops everything and flies by me on the stairs to my bedroom. I turn on the shower and he yells no no no, and leaves the bathroom to play in the bedroom. It’s then his turn to take a bath. I turn on the water and he throws his toys in but I have to take the bucket the toys where in and set it on the counter. He must be told ahead of time the faucet is going to be shut off and that simple step is extremely important. Once the bath is done he steps out and I wrap him in a towel and he waits. He waits for me to put the toys one by one in the bucket and pull the drain, also a very important step. Now we are carried downstairs to the couch and he hangs out for bit, literally by the way and something we are trying to get changed.

                Now it’s time to get dressed and leave the house.  Anywhere is fine even if it’s a just drive but if he is in someone else’s care I wouldn’t recommend a new place unless you want to stay until he is exhausted. Back to getting dressed, it must be pants first then a shirt. Socks, shoes, and a coat are next and if you mess up the order you’re in trouble. So don’t mess up the order in which the clothes are put on. Put on because he can’t do it himself. Don’t worry about him running off when you go outside because he will go straight to the van, its part of the order. Make sure the garage door is closed when you leave or another struggle will begin when you return.

                Now we have returned and if that garage door is open even an inch you will not get him in the house without a full blown meltdown. If it wasn’t shut when you left get it done before he gets out of the van. Extremely important or the rest of the day is going to be extremely hard for everyone. Once he is out of the van walk around the house to the back yard and once he is in the fence you are good to go for a while. He will play and you can relax for a bit…breath now. When he wants to come in he will want his clothes removed and there is another order to this. Shoes first along with the socks and pants, working your up but when you come to his coat and shirt, it is one arm at a time. Do NOT try to pull anything over his head in the arms up strategy most kids will follow, or another struggle comes.

                He’s off to play and bug his sister and brother and all through the day a drink has to be available for him and he needs constant reminders to drink it. He typically doesn’t eat lunch but will hand you a snack if he wants one. You can try to feed him dinner but he won’t eat it or sit at the table while you eat. At the end of the day milk with some protein powder and whatever he will eat is fine.  Do make him a plate and put in on the table because one day he will decide to participate but for now it’s ok to let it go. He won’t conform and even if it’s tempting to make him, don’t.

                Evening is very easy if he hasn’t napped during the day. He will play so play with him even if he doesn’t seem to notice you doing it. His favorite thing to do is dance to One Direction with his big sister so if big sister isn’t there step in and have some fun.  If he hasn’t fallen asleep by 7:30pm it’s time for bed and be sure to tell him this. If it’s been a good day he will go upstairs ahead of you and jump into bed. You need to get in bed with him and tell him it’s time for sleep. If he doesn’t listen turn your face away from him and he will calm down. Don’t try to cover him as he is particular about the covers, he will handle that. Quickly he goes right to sleep and you can sneak out but if you miss that 7:30pm window it will not be this easy. He will muster up extreme hyper ability and it could take hours for him to calm down and crash on his own. Don’t miss the window!

                Even after writing this I can think of a few important things I missed that could muck up an entire day like he will only go potty in a pull up and will only wear it to go potty. He will disappear to do this and if you don’t pay attention he removes it immediately so be ready. The big stack of kids movies are worthless, do not put one in or he will meltdown. If a meltdown happens he needs to be placed on my bed and left alone. You cannot talk him out of it the harder you try the worse it becomes. If and when he calms approach him at his level, meaning get on the floor and talk very quietly. He won’t point to things he wants and he won’t speak so you will encounter a meltdown without a doubt.

                So you see leaving him is not so easy because the little details are so very important to get through the day. If his siblings are there it helps tremendously because they know most of these details but even then it’s hard to understand how important these things are to follow. This is our typical day and if we have a not so typical day I am prepared for the outcome and sometimes surprised at well it goes. It is very hard for others to understand why a child can’t adjust to even the smallest change and it is even harder for a parent to leave knowing how important these details are. A short time away doesn’t cause much worry because he actually keeps busy with the change but an overnight away is a big change. I am not sure who I would be more worried about if I was gone. I would worry about him and how he is adjusting but I would also worry about who is caring for him and if they are able to keep up. Eventually I will have to find out how this will go and do some adjusting as well and I am still coming up with more little important details as I write this that could throw off the entire day.

               

A part of autism I think we both could do without.

                There are times in this autism journey I feel completely confident in how well I know my son. No question I know what is going on when a different behavior comes into play and I can explain it. There are other times on this journey I am at a complete loss and truly question if I know what the hell I am doing. I do, but at the same we have days I just don’t understand and I don’t think my son does either.

                For the past week things have been hard and you could say everything has been intensified for him. Absolutely no clothing which is sensory related, lights being shut off until we are standing in total darkness, and taking a bath even became a problem. He became sensitive to the sound of the bathwater running and sensitive in a way shutting it off was a problem. After that the feel of the water would get him and these are things that don’t bother him anymore, but used to. He stopped trying to talk like he was and most of the sound he was making was yells or loud sounds he just repeats.  Are we in a regression? It appears to be with no clue at all what caused it.

                On the other hand we woke up today and left the house early to head over to my parents home for a bit. I was dreading the change simply because of what has been going on but they are out of town and there dog needed to be cared for. His bath this morning went fine and he was completely on board with leaving the house early. He ran at my folk’s house and played in the van while I vacuumed it out without the sound bothering him. He listened to me and didn’t protest when it was time to leave. I decided to take him to Toys R Us after that as it’s on the way home and even though that might sound like the worst idea in the world I saw it as an open window to take him to a public place and try. He seemed to be doing very well so far and I jump when I see this happening. It can only go good or bad but it’s never going to go good if he isn’t given the chance.

                Toys R Us went great. He wandered of course and I had to repeat a lot but he didn’t protest once and he left with me, not fighting me. He even reached up and held my hand in the parking lot and that is a very rare event. I was so happy for him we stopped for a cookie on the way home and I really could not stop telling him how awesome he was. I might have gone a little overboard on that but can you really hear how awesome you are too much…no. Notice I say happy for him instead of proud of him because I am always proud of him but with autism and a success I feel happy for him. Like he has won a battle that so often he comes away from defeated.

                My point is today one of struggles with my son is when a week like this comes up and I simply just don’t know why he has found himself stuck in sensory overload. He can’t tell me how he feels and even if he could I don’t think it would help either one of us to fix it. We haven’t done anything differently and no strange food was given to him. It just simply happens from time to time and I end up just trying to keep up with the sudden change. Sometimes all I can do is be there even if it’s just in the same room, not touching him. A few times this past week I have been on the floor at his level not within reaching distance, just making sure he knows I am not leaving him and I am there. If that is all I can do than I do it and hope tomorrow brings him peace. Today he seems to have found that peace and I feel confident again that I understand but I can tell you the days that throw us off leave me feeling as lost as he appears to be with no words to explain. It’s just part of autism and It’s a part of autism that I think both us would like to do without.

Your child is NOT the new ADD, whatever that means.

               The words over diagnosed have come up a lot the last few days in regard to autism and when I see it I tend to feel a little opposition. Many people will say autism is the new ADD or kids are getting diagnosed who shouldn’t be. Some will even say some kids don’t deserve a diagnosis which one of the strangest comments I have ever come across. These comments come from all kinds of people and some are autism parents, some are not.

                The word autism came up out loud by our physician when Phillip was two. The word autism came up in my mind months before that. I knew we had something happen to our son and I also knew what it was but I didn’t say it out loud and neither did anyone else. What I did was fight to get his attention, say his name repeatedly without any kind of reaction, and watch him stop using his motor skills to do simple tasks like eating with a spoon. I watched him go into meltdowns and consistently wander off and I watched him stop doing the things he knew how to do before those months hit.  Leading us to the word coming out of our physician’s mouth and the suggestion autism was present.

                The first time it was mentioned we had an advocate come to our home and although she encouraged us to get a diagnosis we held off. We had that little thought that he would come out of it and just bounce right back. Only what really happened was the struggled became more powerful and progress didn’t happen at all. By waiting we sat in limbo not totally understanding why but just avoiding what was right in front of us. During that time I also made up my mind he was going in for that diagnosis no matter who didn’t agree with me. I couldn’t do anything for him and the forces around us were still handling difficult situations like he was not autistic. Like he was just waiting to catch up or stubborn and would come out of it.

                Four therapists for two hours tested him and they recorded it so when the testing was over they could watch it again together and discuss his behaviors. Two hours after that we had our diagnosis and went home. It was a hard day and a life changing one but one thing I remember about that day was a bit of relief. Why would I feel relieved to have an autism diagnosis? Because it gave us answers and a way to get him what he needed to move forward. It also gave me a way to help others understand him without the argument that he was just holding back. It was real, it was on paper, it was verified, and it was clear. Now we could tackle situations with autism in mind as we should have been before the word was spoken.

                When I see comments that say over diagnosed, misdiagnosed, it’s the new ADD, and the list goes on, I think about parents who are in the shoes we were in. I think about a day I went into the bathroom and locked the door to sit on the floor and cry my eyes out because I was pushing through days struggling to know what to do. I was questioning my ability to parent and know my child and it hurt. It hurt every time I tried to help him and no one could see he was in fact different and it hurt when someone would say he just doesn’t feel like it because I knew better. It hurt when people would talk to him and he didn’t know they were even standing there and it hurt when he was screaming from being so overwhelmed he was stuck in a frightening place in his mind. The daily struggle from not having that answer was horrible to live with. No one wants to receive an autism diagnosis and no one seeks that for their child. In fact many people put it off because they don’t want it. It’s very surprising to me that some people refuse to see that and send a message to parents stuck in limbo that they just need to stay on the bathroom floor crying. When what they really need is someone to pick them up and say, it’s ok. Your child is not the new ADD, part of some weird trend, or a case of medical mistaken identity. What they just might need is to hear your child has autism. Now let’s do things differently and cry less.

               

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.

I work at home, at school, work, work, and work.

                Once you become familiar with autism and have absorbed yourself in information you start to see things in other children you did not see before. You begin to notice autism traits in well just about everyone you encounter and many people have them even in the smallest form. You just know your child holds a diagnosis because those traits are intensified, sometimes to an extreme.

                Yesterday at the park there were tons of kids and all of them very polite and kind to each other. Kind of a nice change because it’s rare a large group of kids and adults in a public park are pleasant in every way. All of the kids had manners towards each other, were helping each other, and being very careful. For a moment I thought living with hippies was the way to go I was so impressed by this large group of kids. Not only the kids but the adults were the same way and not one single look of judgment that I noticed from anyone. It was a bit shocking compared to some places I have landed with my son to play.

                Into our adventure we wandered over to the boat ramp so we could throw rocks in the water, one of my son’s favorite things to do he could literally do until the rocks are gone. A boy the age of 8 or 9 appeared shortly after we did and was alone. Just the three of us were there and he sparked up conversation with me. The first thing I noticed about his kiddo was his speech was not good for his age and he was repeating everything he said to me with absolutely no eye contact, didn’t even look at me once. He was repeating things that had nothing to do with the question and completely distracted by the environment around him. That was when I decided this young man was wandering and there was a good chance no one knew where he was. He was also running out to the end of the dock and I was very worried he was going to trip and fall into the Puget Sound with only me to pull him out, or lift him out. Autism was on my mind and I knew I needed to stay right there until someone came to round him up. He may not have been autistic at all but he sure seemed to have some strong traits and I did wonder if that was what brought him to the water alone to begin with. I asked him if his mom knew where he was and his response was telling me he works. Works at home works at school, works, works, and works.

                A short time went by and a woman was running top speed down the edge of the park and I knew this was the adult in search of him. He was out at the end of the dock and yes I did tell him he should stay on land buthe wasn’t absorbing my words so I stood prepared to go for a swim if needed. The moment the adult hit the dock to run out to him was the moment everything changed. The sweet boy who was wandering and trying to talk to us, turned into a whole different child. Mom or maybe even big sister seemed to know she could not touch him. He latched onto a cement pole and prepared for battle. Bottom line was he grew angry and immediately which was a complete turnaround that happened instantly. He screamed at her and she tried not to scream back, he pushed and she tried not to push back. Eventually they found their way off the dock but it was an angry and aggressive exchange all the way. Mom or big sister was trying very hard to keep the anger one sided but she appeared to be defeated by the entire situation and she didn’t harm him or I would have spoken up.

                We also wandered back up to the park and at the top of the hill that sweet boy was clinging to a water fountain kicking and screaming. I badly wanted to jump in and help but really not sure what I could have done. He was in that meltdown place that takes time and I know a stranger jumping in can only make it worse.

                The point to this blog is I often wonder if kids are autistic without a parent’s knowledge or maybe they do know and have no idea how to handle things. The aggression comes out and sadly it is returned out of frustration. Then again I could be dead wrong and he may have not been autistic at all, just a very challenging young man with a young mama who was struggling to understand him. Out of breathe from her long run around the park and at a loss for what to do. In the end I was just very glad I didn’t have to get wet as Puget Sound is not a body of water I care to ever jump in to but I was preparing for it regardless because he did not seem to have any kind of understanding there was danger. To distracted by the environment he was in.

Go on an adventure!

               Today has been a fantastic day and I needed it. Decided to round up Phillip and take him to a park where there was a peace gathering. I am no hippy by the way and you could say I am the opposite of that but I needed to get out of this house. Something new to do and something Phillip could just run and be Phillip at. The park was also a place my dad helped design and I had never been there, even though I grew up in the area. The sun was out and I felt a bit like Bilbo Baggins running out of the Shire in the Hobbit when we left the house. Going on an Adventure!

                The park was awesome and Phillip just took off with me following. He headed towards the playground and then of course passed it right by. As we walked by I heard a mom say to another “what kid doesn’t like a playground.” Not directed at us by the way but it gave me a giggle, because this kid is one of those kids. After he surveyed the land we headed back to the playground and to my surprise he headed down the slide more than once. Again to my surprise a little boy walked up and my son looked right at him and said “Hi”. Now that might not seem like a big deal but it is a huge deal! He has never done this and he never speaks to kids at a playground. The rest of our adventure was spent exploring and watching the crowd which was complete entertainment. We left two hours later and without protest.

                Arrived home and my dad called to ask of one of the kids wanted to go visit his neighbor in the rest home. I haven’t seen my dad in over a week and considering he is one of my very best friends I wanted to go with him this time, I missed him.  Left Phillip home with big brother and took off for another new adventure. Not a very fun one to begin with as seeing a man age in a rest home is not a fun thing to see.  Seeing anyone in a rest home bothers me simply because each person has a story and I want to know all of them.  We were able to fix a TV for his neighbor so he had a bit more for entertainment than staring at the walls and that alone made a difference for him considering the circumstances.

                When we left my phone was still quiet so we decided to answer a sushi calling my dad was having only the sushi bar was closed. We ended up in a Vietnamese restaurant instead that neither one of us had been to and through it all my phone stayed quiet. I even checked it to ensure it would yell at me if needed just in case. Came home and everything was intact and perfectly fine without me. It was a day I needed because too many of them lately have gone by with me down in the dumps. Down in the dumps is no place to be stuck and thank goodness today turned things around.

                Good days always come but sometimes you really do have to get up and reach for it, or you get stuck. Go on an adventure! No matter how small or out of the ordinary it may be because it’s good for you.

How does autism affect a relationship?

                 How does autism affect a relationship? Well I don’t know but I do know how united a couple has to be to move things along in a positive way. I am more than impressed with the couples I have encountered who seem to be united for their child no matter what. That is not an easy task at all and you can say a couples world is somewhat rocked when everything changes. A change that wasn’t planned for or expected can put a couple to the ultimate test. Some couples unite and some divide and both are an extremely big challenge.

                 Here is the easiest way to break it down and it goes a little something like this. Your typical couple has a baby and they know what’s coming. Sleepless nights, most days are spent at home, you celebrate the milestones, and at a comfortable age you call grandma and have a date night. Sometimes that comfortable age is only weeks old because grandma knows babies. You might take your child to story time and sit quietly with the rest of the moms with your little one keeping still on your lap. You can attend sibling’s school events while your child plays or keeps by your side.  You’re able to take your child anywhere you go as long as you pack enough provisions for the adventure. If you have older children they can even step in if they are old enough to give you some time to spend alone. You get just a bit of freedom back with time to maintain an adult life and no it’s not just that easy but we all know how having a child works. Before you know it you are back to Friday night dinners out and meeting up with friends for a glass of wine. You’re thinking about your child but you’re not worried because it’s your time and whoever is taking over, is excellent with small children.

                Now let’s venture into autism. Your child is hitting a comfortable age to get away but for some reason you can’t, they aren’t comfortable. Your child isn’t taking to the grandparents like expected and taking your child anywhere you want to go is not happening. Just getting your child in and out of the house is a painful challenge. Your child has habits that are complicated and you can’t just hand them over to anyone and head for your freedom. Your child wanders the point you are afraid if someone drops there guard for only seconds there is potential danger. You know this because it has happened to you. You might have tried to leave your child with someone for a short time and it didn’t go well. That little one who is supposed to stop crying over mom leaving, didn’t stop crying by the front door until you returned. There are the smallest details that have to be followed to keep an ease right down to the pattern you remove thier clothes. An example of that would be having to remind my daughter the other day, one arm out and then the other. Trying to remove his shirt straight up over his head with the old arms up routine will send things into frenzy.  Your child isn’t speaking or asking for things and nearly all of your communication is based on body language, an art by the way that is created with daily interaction. Not something you could possibly explain or write instructions for. Super Nanny herself would be left in the corner looking like she was rolled by a gang of baboons trying to manage your child’s day.

                Couples who take this unexpected challenge and unite may get some freedom but one can guess that freedom is rarely spent together because one of them has to stay behind. There is no one else who understands just yet. Couples who divide might have one person who desires the freedom they expected from the start and when it didn’t come, they went after it. When this happens it is not always a bad thing for the child. When my son was first diagnosed a women with three autistic sons said to me, “you absolutely have to be on the same page, no matter what”. Those words couldn’t be further from the truth and it is a huge challenge for everyone involved. If your united your awesome and those who are pushing on alone because you grasped the unexpected challenge with grace…equally awesome! Neither of the two is easy in any way.

               

Easy does it! Every single day.

                Sitting here with my cup of coffee that is stronger than usual on purpose, the big kids are off to school, and the little man is rocking some One Direction in only jet plane underwear. He slept in them and has for a weeks now with no problems at all. Interesting thing is he wears underwear the majority of the day and never has an accident in them. Is he potty trained? No he is not and has not used the potty one time.

                We have reached a point in the potty training process I cannot do one more thing to make the process easier. Beginning last fall I was able to get him used to sitting on a potty by building him a tiny little table with some sensory items that slipped over his lap. Showing him sitting the potty was ok to do and found a ton of success with that but he did not actually use the potty. We have done visuals, social stories, and apps to the point he knows the entire process step by step. He even knows how to wipe his backside and does it with speech. He will check the toilet paper and ask, “it is clean?”. I have hung a mirror on the wall across from the potty so he can entertain himself making faces. That never seems to get old for him by the way and probably one of the best things I did during this process.  He has taken it upon himself to sit for a very long time on the potty, over an hour, and still no use.

                We had one day he removed the toddler seat and he fell into the potty. I peaked in to check on him just as he was sitting down and he did in fact fall right in with his little legs sticking straight up in the air and yelling for help. Honestly thought that day would be the end of his try for a while as the shock of the cold water hit him by complete surprise. Yet the next day he was back at the potty attack with full intent to make it happen.

                He stays dry at night and wears underwear all day long, in fact I am 99% confident we could leave the house for a very long time in underwear and come home completely dry. I haven’t done it yet but considering it. So what is the hold up? It’s simple and yet so entirely complicated I have no idea what I can possibly do for him. Communication and not between him and I because It’s actually very surprising how potty training has come along without much verbal communication. The communication between his mind and body are not connecting just yet.

                His self control is extremely impressive because he will absolutely not go potty in his underwear no matter what and really when we go places he will not go potty until he has returned home. Now, you would think, just put him on the potty when you get home. Doesn’t work and he will continue to hold it until he is suffering in physical pain. I have read every single potty training trick in relation to autism and no autism and none of it applies. One was sent to me yesterday on how to incorporate a timer and sit him on the potty every half hour. Won’t work because his mind tells him going potty is supposed to happen in a diaper and only a diaper. We put one on, he goes potty and we go right back to underwear.

                There is no trick to getting him any further at this point and it is all up to his mind connecting with his body to make the transition, comfortably. I can’t get frustrated and try to force it because we will move backwards and it will take even longer for this to happen. My son has taught me a style of parenting that begins with this phrase every single day… Easy does it.  Right along with pay attention and understand. If I didn’t know this was a mind and body communication block, I could cause some serious damage for him trying to learn. Without understanding what is happening I would be a brick wall in the middle of his mind and body. He already has to find that connection and I sure don’t want to be the one thing that makes it even more difficult.  His try is strong and he is working hard at finding this connection. We already know autism has a hard time connecting senses. There can be too much sensory input and there can too little sensory input but no matter which one we face….understand, pay attention, and EASY DOES IT.

                I  

 

Routine is a powerful thing...down to the smallest details.

                Sometimes you have those moments even people very close to your child forget how autism holds the mind. My fabulous daughter was the unsuspecting victim of this first thing this morning when she put a movie in for her little brother. Little brother can’t tolerate the TV until well into the afternoon or even sometimes not at all. The morning started with some upset and confusion when the DreamWorks theme song sent him on to the living room floor screaming. Not her fault at all and you can imagine she was confused considering she does spend her days at school so the daily routine isn’t something she has to worry about. She was just trying to do something she thought he would like and he might have, if his mind would have allowed it.

                These things happen and we push on but it did remind me of all the times since he was diagnosed people have stepped into save him from, well, me so to speak. That mindset that the only reason he does what he does is because I am not parenting the right way. That following a strict routine is the problem and if the routine is just broken it will solve things. Not so, in fact that approach couldn’t more damaging. In defense of autism parents everywhere, it is impossible to parent a child out of autism and impossible to force the mind to let it go. You can change a routine but it’s really just one routine to the next and forcing a child to adjust as expected causes a whole mess of frustration and progress stops.

                For my son I know progress only comes when his mind is at ease and routine gives him ease. When he is comfortable he learns and wants to. When he is insecure or things are not as they should be he pulls back from it all and we wait until he finds his comfort zone again. They say from the start that routine is extremely important but what they don’t really explain is why. At the time I thought it was to make things easier on us just because if he knew what was coming he would stay calm and easy to manage but there really is more to it. It’s a matter of security, comfort, and his mind literally latches on to it and needs it. It is almost like that routine holds his mind still and without it or trying to force it to change, it gets all shaken up.  It takes time to get the ease and security back when things are shaken up.

                 We are all bit like that but with autism it is to a more of an extreme level and even the smallest details can either create or shake up security and ease. He shows me what those details are and some people might be surprised at how tiny they can be. If we would have left the movie in this morning and just thought he was in a bad mood, the day would have been shot for both of us. Turning if off without saying a word and quickly getting back to his comfort zone was all that was needed to save the day. It’s not always going to be so easy but understanding is going to make a world and has made a world of difference for him.

 

            

A little information fire cracker!

                Yesterday this mama had to get away from sitting in the house thinking, it was mandatory to do with the way life was coming at me. My oldest son went to a movie with grandma and my daughter and I went to Ross to shop around for a while. There are times you stop somewhere and you worry how you’re going to get in and out without a public display with the little guy. Most times actually but yesterday I made up my mind my daughter was going to get all the time in the world she wanted and the little one was going to get the same.

                It was a busy place and that is never a good thing but I told my daughter to go do her thing and we would just wander around. Now, Phillip doesn’t wander anymore, he sprints and while he is going top speed he is actually taking it all in. We spent over an hour at full sprint in Ross going around and around stopping for just a moment every once in a while to touch something interesting. Being that it was a busy day I had to weave through the crowd and try and keep up. He just flies right through finding those tiny openings while mom is trying to keep up. I find it kind of amazing some of the spaces he can slip through because it shows just how much attention he is paying to the environment he is in.

                What happens when a mother is chasing a child in circles through a store at top speed? Society happens. The looks as your flying by are all very different and come at you as good and bad. One person might giggle and say “he is a quick one!” while another person might stare with disgust at your parenting. Or lack of parenting is really what they believe is happening. They wonder why you just let your child run and you don’t stop him and they don’t see one thing cute about what is happening that is for sure. Then you have people who try to speak to him and he is totally unaware. He won’t respond but if by chance he does it’s not a verbal response they expect. They get confused by him and aren’t totally sure what is happening. I have seen kids out in public with Ipad in hand which has been recommended to me and I have tried it. Even the magic of Steve Jobs can’t turn the world down, something I wonder if Steve jobs himself could have related to. I also don’t want him glued to a screen so we leave the technology home.

                Phillips energy level is something people don’t understand at all. That energy level has a big affect on things we do and places we go because the reality is he can’t slow down. He has no concept of sitting when there are things to explore. He will sometimes follow but to get him to do it is unpredictable and a big job. He might have a day he follows me through a store but both him and I have the spent the entire time making that happen. If he runs a few feet and turns around that is a huge accomplishment but it’s also a constant battle to get it to happen. If I say his name and he comes back, society views him as a behaving and I just want to hug him and say “you did it!” It has nothing to with behaving and everything to do with grasping the ability to control what he is doing.

                I can’t take him a restaurant and put a kid’s meal with crayons in front of him because those crayons are nothing compared to what is happening all around him. He cannot block any of it out and his little body responds just as much as his mind does. At home he appears to be very calm, most of the time and can control himself but home is full of things he took in a long time ago. He is like a little information firecracker! The fuse is the energy level and once he has taken in too much he might crack. Yesterday the opposite happened. He ran and ran even until his legs started to argue with him to the point he had lay down on the ground like he was planking to power up. I can’t even tell the looks people get when he is doing this and I am not freaking out for him to stand up like a proper young man. Yesterday was a bit of a breakthrough for him because all of a sudden he turned around and reached up to me. He was exhausted and just wanted me to get him off his feet. I picked him up and he laid his head on my shoulder for the rest of the time in the store all the way to the van.

                It’s a moment that almost never happens because he cracks before this ever comes. I end up having to carry him out with extreme protest because he can’t grasp the ability to know…that’s enough. Holding him with his little head on my shoulder was a moment he knew it was enough and didn’t crack. It doesn’t happen often but when it does I know he won a battle and I make sure to hug him and tell him “you did it” and he will do it again.