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.

So you think you have it all figured out? Not yet you don't.

               There is something that happened to me when I realized my son was going to face a different life than expected, along with the rest of us. My mom meter jumped up and by that I mean I thought I had being a mom figured out for the most part but all of sudden I discovered I had to step it up a notch. The mom I already was wasn’t going to be enough in my head, I had to be better. Looking back on that feeling you could even say it was a necessary even without autism being part of the story, I just didn’t know it. My awareness of life and people in general changed.

                It’s a hard thing to explain but some things changed for me and many of those changes came from seeing things more clearly. I had to pay closer attention to life in general. The meaning of support changed and how people go about doing it. I was almost forced to take a harder look at the people around me and their actions because the pressure I already felt as a mom was and is a big challenge to wrestle with. I had a couple good friends who never wavered and even grew closer to me from this change. I call them my two Jan’s! One Jan was already a blessing in my life and remains that way. The other Jan was my neighbor who reached out to me and gave me nothing but support and friendship.  Both Jan’s carried me through and they may not even realize it. Then there were other people who just slowly faded away and it seemed by choice.

                Some of the little things in life that before I could push through weren’t so easy to push through anymore. Those negative forces that come into life and kick you from time to time weren’t acceptable on any level anymore. I also realized I had a lot of those forces that didn’t seem too bad before but they started to become huge burdens. I had to let them go because emotionally I couldn’t afford to spend time on things that hurt my spirit at all. You see when you spend day after day trying to understand your child and many of those days you might end up on the floor crying right next to them, you can’t take in those burdens as easily and process it all. Then get up the next day and be the very best you can for what’s coming next.

                I guess you could say his processing challenges started to make me see my own processing challenges. I was and still am trying to keep up with him on a daily basis and the outside issues that some people bring into life or even bring into your life by not being there, become too much. When you spend all day working to ease things, keep up with your other children and ensure they get the love they deserve, fending off the public, and discovering who really wants to be there for you things become very clear. You start to see how much energy you have given things that didn’t require it. You learn who truly cares to be a part of life in a healthy way. I learned some people gave us more support than I could ever have expected and some people gave much less.

                It’s interesting how something in life like an autism diagnosis can reveal a side of people you never knew was there, good and bad. Or maybe even you knew it was there and when life changed it just became easier to see. My eyes opened to the fact I was too far from my family and we needed them all along but it was time to do something about it. My eyes opened to how many people are really uncomfortable around a child who is different and will actually blame a mother, even people close to you. I learned when you’re not the parent who cuts loose on Friday night at the local bar; people fade out of your life, not a bad lesson by the way. I learned kids are the most understanding sometimes because before we moved every single kid that came to our home met Phillip with a huge smile and didn’t see his autism at all.

                The most important thing I have learned is life is too short and too awesome to spend on things that just steal your energy. I need all the physical and mental energy I have so I can put into being the mom I need to be. The mom I wish I would have known how to be 14 years ago when I first became one. I was never a bad mom but I truly didn’t know how much better of a mom I could be until I was forced to learn. It’s almost like when the reality hit, it was life saying to me, “so you think you have it all figured out? Not yet you don’t.” The simple word autism slapped me right across the face and I knew nothing. It’s on odd feeling to be pretty comfortable in your knowledge and one day life humbles the hell out of you because you just realized how ignorant you really are to the changes coming your way. Well played life! I have learned more in three years than I could have ever imagined learning in an entire lifetime and I know I will never have it all figured out, but at least I am seeing clear enough now to give it my best shot.