You might be doing such a great job as a parent, no one sees the challenges you avoid.

   The hot summer days are so fun aren't they? Boating if you have a boat, camping, bonfires, trips to a favorite water hole, and travel is a big one in the summer for all. Our last two summers have not included much of this and I have had to back out of numerous plans that I would have loved to participate in. These things are getting easier with time and today we might even venture to the lake and beat the heat but in the past these things have created huge obstacles to either work around or just flat out avoid.
  
   My son never used to respond to the word no and because of that my body became the word no. being a human shield was all I could do to create a boundary or protect him from things that would harm him. Day after day of doing this was exhausting and eventually I had to just pull back from certain events. It was never just the being a human shield though because many other elements played a role in the challenges of the day. My son doesn't have an off switch and I know your thinking, "what three year old does?" What I mean is he lacks the ability to turn his senses down when they are bombarded with the world. He simply cannot slow down once it's kicked into high gear and it takes over.

   This is when he doesn't drink, eat, and won't even take a break to sit for a moment. Typically a child will think they are thirsty and stop to take care of that feeling. He will not and it's the same thing with eating. Another element to this bombardment is eventually he doesn't appear to hear anything at all. The wandering begins and my voice becomes irrelevant. Partner this process with a good mosquito attack and the fun stops. You cannot simply tell an autistic child, don't itch it and will go away and I knew that so avoided it ever happening. The only option I had was to simply go home even if I didn't want to.

   Like I said these things are changing with time and things are slowly becoming more possible instead of impossible. Eating and drinking are still a challenge but my son is learning to cope with the bombardment on his senses and can manage longer now. Life is simply getting easier so yesterday when I was discussing this topic with someone who is close to us I discovered something that I know many parents face. The person said to me "I just thought you didn't want to be there." I will tell you when that was said I felt a bit like crying, so I did. How could it be the people closest to me in the past didn't understand I was doing what I had to do, not what I wanted to do? My worst fear while having to leave literally came true.

  That I was rude, didn't want to be around, didn't like the people I was with, and that I was just boring and stuck up. I worried about that many times but also thought the people close to me knew why I was almost never participating or leaving early. I suppose in my head I thought everyone could see how challenging situations could be and then I realized I was doing such a good job of avoiding the challenges no one around me even realized what they were or just how things could really get difficult. Over the past year it slowly turned into me appearing to be a bitchy woman who leaves all the time and all I could think to that was....OUCH. Ouch because in all reality I cannot think of one situation over time that I really just wanted to leave but the amount of times I had to I can't count. I just had to.

   To those parents who face this remember you might be doing such a great job at keeping the world calm for your child, the world has no idea how overwhelming it can get. To those who think a parent is just using autism as an excuse to leave or stay away you couldn't be more wrong. I don't know what people can do to make a situation easier for a parent to stay but I do know understanding what a parent feels is a huge step to helping them push forward feeling good about the job they are doing. I can guarantee you that understanding makes all the difference in the world. Sometimes it's even very helpful to miss a little fun and leave with them because isolation is an entirely different topic.

Poor me....

   It's been a difficult couple of weeks around here and absolutely nothing to do with autism. Just changes in life in general and sometimes changes get mom down a bit. We are all entitled to some poor me time, even if we don't want it. Sometimes it seems like it's a necessary part of life so whatever led to it can be sorted out, instead of just stored in our minds.

   Yesterday my son reminded me once again unexpected changes happen and sometimes they are hard to process and other times simply amazing. I took him to McDonalds to play because we have had rain day after day and he likes it. There were a ton of kids and a ton of noise right along with total chaos in every direction. The woman sitting next to me actually decided to leave because she was afraid her son was going to get hurt. A legit fear because as she was telling him it was time to go another older child ran him right over without a thought.

   A McDonalds trip used to go pretty bad for us. My son would completely ignore other kids and fixate on one thing for almost the entire time we would stay even if it was just a picture on a wall.  He would never climb into the large play area and leaving in general no matter what, always a kicking and screaming nightmare. He would get knocked around by other kids and it didn't faze him one bit. By didn't faze him one bit I mean total lack of awareness.  Another child would take a toy from him and he would never react, just let him have it and carry on. Two months ago these things really bothered me because it's a life skill we need to have, standing up for ourselves in one way or another and he just didn't have it. I was the part of his mind that wasn't aware.

   Yesterday we stayed for almost two hours and I literally watched miracle after miracle play out. He climbed all the way up to the top of the big toy. He ran all around and was interacting with the other kids, with caution for good reason. One boy shoved him and although I would never want my son to return a shove he did in a playful way and that was a big deal for him to do. He stayed pretty close to the smaller kids and understood to keep a distance from the wild big kids. At one point a little girl next to him was plowed right over and to my surprise Phillip leaned down and helped her up asking if she was OK. He initiated a social interaction that blew everything I have been told about his difference right out of the water. Bottom line after our time was up, in a sea of children he stood out and not because of autism but because of his self awareness, kindness, and awareness of everyone else.

   When it was time I said to him "it is time to go Phillip" and I only said it one time while he was rushing by. He stopped, took one last drink and walked right out of the building in front of me. Absolutely no protest and lead the way all the way out to the van. Exhausted might have played a role in that just a bit but it doesn't matter, it happened and that's all that matters! Once he climbed into his car seat I leaned over him and he kissed my cheek saying "thank you."

    I truly at times over the past year never thought a day like that would happen anytime soon. I was told it wouldn't and as many times as we had tried an outing like this it just always went very badly. You believe every time you try again but you see the vice grip autism has on your child. It's a vice grip that feels like it will take years to loosen and that is what we are told. You are forced to accept it and keep faith in the next day.

   In the end I was reminded that even though I was working through some poor me transitions in life, my three year old is stronger than me because he doesn't even know what poor me is. Maybe one day he will but I don't think even then it will slow him down in the slightest. There is a saying "I have autism but autism doesn't have me" and I never could totally see the meaning in that. Understood it completely but for a long time autism really did have him and that is certainly not the way I would explain it these days.

You crack me up! O no, mom is going to fall apart!

            We say the funniest things to children and each other without even realizing it or at least I never used to realize but I do now. The literal mind will take a comment and it will instantly create a literal picture in the mind. My two older children who are 13 and 14 are not autistic but when they were little I would tell them every night " good night sleep tight and don’t let the bed bugs bite." An innocent comment my mother always said to me. Just last year my oldest son said to me “you used to scare me when you said that to me.” I was a little surprised because that was never my intention but if you take that innocent good night saying literally, it’s a little scary for a child. We had a good laugh about it but I have learned to really listen to the things we say and picture it so I might interpret it the same way my son with autism would.

Here are a few things we say and try to place a literal image exactly how it reads and you will see a speed bump on a communication level.

It’s raining cats and dogs!  Child looks outside to expect four legged furry animals falling from the sky, nope just water.

Run like the wind!  Thank you Toy Story for forcing me to realize the wind doesn’t actually run.

Let’s hit the road!  Or we can get in the car and drive because hitting the road would hurt your hand a bit.

Time to jump in the bathtub!  Or carefully get in because jumping in is just a bad idea in general.

I am losing my marbles!  Child grows concerned because the loss of a toy is not fun.

We can do that; it’s a piece of cake!  Mmm cake, and probably has nothing to do with the task.

You crack me up!  O no, mom’s going to fall apart.

Curiosity killed the cat!  Curiosity sounds extremely dangerous.

He or she is the spitting image of you!  Gross

You are what you eat!  Today I am pizza and juice.

You can’t judge a book by its cover!  Although this one has an extremely important meaning, some books really do have great covers.

   I am now aware my kids might have spent a good part of early childhood waiting for bed bugs to bite and I can only imagine how there imaginations ran with that simple comment. Here is a site with all kinds of these sayings to check out and put a literal thought to. You might find it’s much more confusing than we realize and if you know a person with autism who is verbal it would be very informative to read some of these to them and simply ask what they picture in their mind. A good way to understand a different way of thinking and a little closer to understanding as well. http://www.idiomsite.com/

 

 

 

 

A question for doctors, specialists, and Autism Speaks research teams.

               This morning I was sitting in the van with my son in the autism center parking lot waiting to go in. Another mom and her child about my son’s age, three, were walking around outside waiting to go in as well. Her son was exactly what my son was a year ago and I had almost forgotten what that was like. He was repeating steps over and over again and his control over his body was what you would call a bit clumsy. Every single tiny distraction grabbed him and he would have to stop to inspect it no matter what. I could look at his mom and feel the exhaustion from it because I remember it so well. Exhausting repetition and having to do all of the thinking for her child, right along with trying to keep things moving in the right direction. Just going into the building gave her numerous distractions to get him past.

                A year ago my son didn’t speak at all, barely would pay any attention to other people, his emotions seemed to be flat lined, other than frustration. Nothing worked to get through to him and just getting through the day was completely exhausting and often heartbreaking. Life has changed drastically since then. We moved because there was no support and the family I thought I had in the area at the time stopped being a part of life. My son’s father is no longer in our lives for a few different reasons but I would be lying if I said autism wasn’t too hard for him.

                My son completely regressed after a large round of vaccines from advanced at 18 months to regressing back to 6 months old at 2 years old. Before I lose anyone on that comment, please bear with me until the end.  Many people debate the vaccine effect and I understand that but keep reading.  A heavy dose of vaccines at one time can overwhelm an immune system leading to the immune system attacking the body it’s supposed to protect. As I understand that this can have a neurological effect. At 2.5 we had him diagnosed with autism and the outlook was he needed 40 hours of therapy a week. Physical, speech, and behavioral therapy was recommended at the time and we were told that is the only way he will make progress. I wasn’t on board with 40 hours of therapy for a 2 year old because that is a grown adults full time job hours and I felt it was to dang much. Not only that but the therapies we had available were not ideal for him. He hated it all from day one and his frustration level was overflowing. Not a day passed he didn’t have multiple meltdowns, not one day. Also not one day passed I wasn’t terribly judged for doing what I felt was right and consistently told I was holding him back by not doing what the specialists said I had to do.

                We are told autism is genetic with some kind of environmental key that pulls the trigger on the autism gene, of course no one knows what that is and according to the insane research of an autism mom, it’s everything. A year ago I felt my son would possibly never speak or say I love you. I felt he would never function at the rate he was before autism again. I had strong hope he would but realistically where he was at, he seemed so far gone it would be years of therapy. He has never had more than one hour of speech therapy. He never went to physical therapy and only now has he been at the autism center for just over a month at 15 hours a week but his progress began drastically 6 months ago.

                He speaks and is working hard at communication with success. He interacts with everyone and his personality has been blasting through. This morning I gave him his daily high five before going into the center and told him work hard, like I always do. This morning he also gave me my daily high five only followed it with “OK mom” and off he went. He didn’t repeat my words or ignore them, he responded just like a child would, or would want to. I say want to because I believe he always wanted to and couldn’t.

                Here is my point; I have read numerous stories of kids “coming” out of autism and kids making a ton of “progress.” When I think about all the things that have changed in the past 6 months that I felt I wouldn’t see happen for years I have one question for scientists and doctors…..why does it seem my child is healing from something I was told is a genetic difference? A genetic difference that has risen 75% in the past 5 years. My son is still autistic and still has many challenges to face but compared to a year ago he is not the same boy or even close to it. Without the therapies and what I used to call the rescue mission attack he has made an enormous amount of progress on his own. In fact even more mind blowing is we no longer do a daily probiotic, he is not on a special diet, and I have not been doing one thing to force this progress or address a health issue.

                To end today I ask the specialists, doctors, Autism Speaks research teams, and whoever else is trying to help us understand autism….is my son making progress or can we add healing to that question and if so what the hell is going on? Spontaneous progress at an unexplainable rate was never mentioned to me when we received our diagnosis.

The truth is...not everyone will understand.

               The truth is not everyone will understand autism. We as parents can explain until we are too exhausted to speak, write, or educate and even then it is impossible for some people to understand. To be totally honest my son has behaviors I don’t understand. I know what he will do but that doesn’t mean I know why he does it. Potty training or lack of is one example and puts us in a situation I can’t explain to others and restricts us to home. He will not go potty away from home and so many times someone will say to me “eventually he will.”

                No, he will not go eventually if he doesn’t want to. He will end up unable to walk and in screaming pain before he will go but the moment we walk into the house, problem resolved. I can take him on day trips and be gone all day and yet he will hold it for the entire day. I can take him overnight but he will hold it then to and when we moved he held it for days before he decided it was ok to do. Knowing this, I do things around it to prevent him from hurting himself with his unexplainable willpower. He has trained himself to go potty before his time at the autism center and has trained himself to go when we arrive home. In fact I could send him in underwear anywhere he goes and know he will stay dry but he will not use a toilet. We are still in the pull up zone and eventually he will transition but I cannot explain his ability to have this self control without being able to transition. It does not make any sense at all and that is ok.

                That is an example of what no one can understand but we also have elements in life I do understand and others do not. Even people who should know him very well just don’t. Yesterday I was asked a question that smacked me with this reality and even though the person who asked it hasn’t been around my son for a while now, they are familiar with his autism or at least I thought they were and really no excuse not to be.  I told this person about a demolition derby I had gone to a while back with a friend and the question was simple, “did you take him to the demolition?”

                I was so thrown back by that question from someone I thought understood him I didn’t even answer right away because I was speechless. Then I said, “No, I did not take him” and left it at that because I knew that question was a clear indication there was absolutely no understanding on that end.

 A demolition derby is very loud and even kids who are not autistic are wearing headphones to drown out the sound. Taking him to something like that would actually be cruel on my part in regard to his own personal challenges. Loud sounds are very hard for him and the person who asked the question should have known this. So why didn’t that connect? No matter how hard I try to explain, no matter how many blogs I write, no matter how hard I work or time I spend trying to help others understand there really are people who just will not get it. It’s like a brick wall I just keep running towards with my hands full of explanations and I slam into the wall full speed every time. All of the explanations just fly through the air and scatter. I pick it up and go try to find a better way to explain only to hit the wall full speed all over again when I think I can get through.  There just really is no way to break through and to keep trying is an exhausting waste of time.

This sounds very negative but it’s not because I have also learned a valuable lesson from this. That brick wall is ok and it’s ok that the person on the other side is unreachable. That simple question surprised me but that is ok. What is not ok is me consistently running into the wall because every time I bounce right off of it, it is a bit painful. There is no time for running into walls and exhausting myself doing it. He is autistic and he is complicated but he is awesome in every way even with those behaviors that don’t make any sense. In fact maybe one of the coolest things about him is it really takes a person with a unique perspective to understand the things that can be understood.

RIP Alex Spourdalakis

http://abclocal.go.com/wls/story?section=news/local&id=9135553&rss=rss-wls-article-9135553

                The above link is a story about the tragic end of a 14 year old boy’s life, Alex, and a lot of you have seen this story in the past 48 hours. Some of the responses to this horrible story have been a bit disturbing to me as I have read through them.

                I understand completely that people are not getting the help they need in many cases, or not even close to it. On the other hand there are also people getting an amazing amount of help so it could be a matter of where you live and what is available through a medical and insurance provider. I also understand parents are desperately trying to keep up and stay balanced at the same time. They are fighting to understand, fighting to get others to understand, loosing friendships, loosing family, suffering from lack of sleep, and I could go on and on but I won’t because it’s my point today.

                The women in this case where for one high on narcotics when they were found. Doesn’t mean they are drug addicts but it doesn’t mean they are not. Maybe an attempt to commit suicide but we really don’t know yet. The mother was moving around from hotel to hotel with a special needs child who she clearly could not handle. He was big and he was hard to control and they wanted him to get help that wasn’t there.  Alex was very close to being taken from his mother and even though the circumstances where not what they wanted, we now see what circumstances they preferred.  I don’t know about anyone else, but I tend to think he wasn’t taken soon enough.

                I have read comments that say autism needs to be cured, parents can’t find help, autism this and autism that. No matter what autism does not make a person stab a 14 year old to death. Lack of help does not make a mother kill her child. Difficult circumstances do not provoke murder. Anyone who is capable of killing and I don’t care if a 100 page letter was left about the hardships, has a serious issue inside themselves that has nothing to do with autism. The circumstances of the situation have nothing to do with the ability to end a life.

               
                We consistently see stories of people and children with autism abused, treated badly by caregivers, and sometimes even killed. Every time we are horrified about the treatment of a person with autism and every time we hope for understanding and we hurt for what the child or adult faced. This story is no different. This was a child who struggled with the world around him and the people around him ended his life. The people he loved and relied on to somehow help him face the world stabbed him to death.  His last memory was two of the people he probably loved the most in this overwhelming world ending his life because the options they did have where not what they wanted.

            

               Do not ever forget with this case Alex’s mother could have gone somewhere and said “I cannot do this one more day; I am going to end my son’s life.” If she would have been healthy enough in her own mind to do this he would still be alive but she didn’t because she preferred to kill him. That is not related to autism at all. This was a sick person and by sick I am not talking about Alex at all because she had options other than murder. Maybe she felt there was no help and it doesn’t seem there was much help and maybe she reached the end of her rope trying to care for him, clearly she did, but killing him is disgusting. I can only hope when she faces a trial, Alex is not to blame for what she was capable of doing to him. Unfortunately I think we all know there will be a lot of blame in this case and not enough of it will be on his murderers but we will see and I hope I am wrong. If no autism was involved in this case would people see it differently? I know how I would answer that question.

               

Netflix taught me a valuable lesson about my son.

                Netflix on the Ipad has taught me a little something about my sons processing and the way his mind works. First off he will not watch TV on the main family TV in the living room unless it’s AFV, then he is rolling on the floor laughing for a full hour but anything else is out of the question. When this began I had a difficult time understanding why he started to hate the TV and would throw a tantrum if it was turned on at all but after watching how he uses the Ipad, I get it now. It is the lack of control and if something comes on the TV that is overwhelming, he does not have the power to stop it. He can run away but he can’t make it stop. It is too much too fast and he cannot make it stop.

                When my son watches Netflix on his Ipad he will watch your typical children’s shows and some discovery documentaries. Lately it’s a Mickey Mouse marathon and last night he refused to sleep so we grabbed the Ipad and crawled in bed to watch some shows. I had control this time and that is pretty rare so started a different Mickey Mouse cartoon I thought he might like. First he shields his eyes when something is new and it’s not because of the new show itself, it is more of a barrier for him to ease into it because he can still see it through his hand. At this point I give him control because I don’t know if he will tolerate the show or not and allowing him to shut it off makes a big difference in the long run.

If you have used Netflix on a touch screen you probably know just how much control a child might have over a show. He can fast forward, start over, stop it entirely, and lately has added the subtitles. What happens after he gets through the first step of shielding his eyes is when I learned a valuable lesson about how he processes information. He will watch the show right up to the point just before it’s overwhelming and start it over. He has already processed what he is about to watch again and he gives his mind a moment to regroup and rest. Then he will watch it again just past the point he stopped it last time and begin it again. This goes on through the entire show, just a bit more each time. Last night we watch a Mickey cartoon at least 15 times before we reached the end peacefully. Just a tiny bit more each time he started it over and each time giving his mind a chance to process the new before it became too much. I can actually watch his pupils grow while he watches the next few moments of new and he tenses up a bit. The tense part is just before he starts it all over again.

This is fascinating to me because it speaks volumes as to how he is comfortable with new information coming at him. A bit frustrating to because by the tenth time of starting over I was begging him to watch it to the end but if I forced him he would have stopped watching it completely or he would have gotten upset.  It tells me why he rests in routine and why changes are best eased in a little at a time and knowing that has made a huge difference in the way I do things with him. It’s not always this way and many times he can tolerate a big change but because of the way he operates Netflix I understand that processing part of him that needs to back off and begin again before it becomes too much to take in. A pretty awesome insight as the one who is trying to understand without him having the ability to explain it to me. By letting him do this he has been able to explain it without the words and for that I love Netflix on the Ipad and his own ability to understand himself. He has the ability to back off through this and process the information and that is something the main TV doesn’t allow him to do. It is also why the main TV is almost never on until he goes to bed. It’s located right in the middle of the house and can’t be avoided when it’s on. This was not always an issue and only began about 6 months ago, or you could say it might have been a problem and I just had no idea until it intensified to a point no TV was the only option.

Self defense instinct is something we use all the time, even as small children.

               Self defense is an instinct most of us are able to use one way or another and when we think of self defense we think about actual physical defense when we might be in trouble. There is an entirely different form of it that I didn’t even realize was so important until I had a child who doesn’t use it. It is a small form of self defense that we use throughout our lives all the time and it actually comes pretty naturally for most of us from early childhood but for my son it does not. For many kids with autism it does not. We know a child or adult with autism can be a target for being bullied and abuse because of either lack of speech or lack of understanding. It’s why so many parents worry and keep a close eye but it’s not just a matter of avoiding abuse or being bullied, it’s a also a life skill that isn’t there and yes it causes me to be a overprotective helicopter mama. Honestly I am one of those mamas’s anyway but it is possible to step that up.

                An example of this, and I could give many, but this is one that happened just the other day. We took a small hike around a lake and ended up at a swimming area with a small beach. The hike alone was very short but because of distractions it seemed very long. Lots of stops and a lot of telling my son it’s time to keep moving. When we got to the beach other kids were swimming and I let him get wet for a while. This was the day we kicked routine in the backside by the way in case you read my blog regularly and it did help very much. There was a little girl who was very friendly and she told me she was 5 years old. She was adorable and very talkative with a ton of energy which made her very entertaining to my son. He adored her immediately and would have followed her anywhere and tried. Phillip went into the water with her and she would scream “shark!” then they would run out of the water laughing over and over again. Soon this game took a twist to splashing and she began to splash Phillip in the face. Here is the self defense life skill we use even as kids or lack of. Phillip stood there and took it and it didn’t even seem to process with him that he could in fact and should, run away. The little girl splashed more and harder and soon he could barely breathe and still did not avoid it or even splash back.

                I gave him a moment to react but I also had to step in and ask her to stop because she did not understand that he would have let this continue no matter what. He was playing a game by letting her but he was unaware how to stop her. This happens a lot with other children and I am forced to step in all the time because the instinct is not there. It can be even the smallest thing like sharing a toy because that instinct is strong but he has no idea how to get it back. For one he can’t ask for two he doesn’t seem to understand the process.

                We ended up leaving shortly after the splash attack because it didn’t take the little girl very long to see she could get away with just about anything and soon the splash attack turned into a mud attack. Her mom was there but she was far away and I wasn’t comfortable having to keep stepping in. The crowd her mom was with didn’t appear to be one I wanted to end up in a confrontation with over telling her daughter what to do.

                I can’t speak for every child with autism, only my own, but I know this is a real challenge for many parents. The self defense instinct is more important in daily life than we realize and when a child doesn’t have it or hasn’t learned to use it you end up having to do it for them more often than not.  I have encountered some kids who are amazing at being very kind and understanding with my son and then I have encountered the mud slingers. He is going to meet a lot of them in his life and I am not always going to be there to be his stand in self defense instinct. A very real fear because little mud slingers grow up to be adult mud slingers. On that note, I hope that adorable little girl does not grow up to be that and she was just a child learning the world like my own child is trying to do. With a mom who was able to sit back and not pay attention for a long time and totally unaware how blessed she was to have a little girl who was able to be so independent. Then again, there is such thing as to independent.

Can routine hold on to tight?

                 I am an extremely positive person and I can find the silver lining in almost every bad situation I come across. Struggles are part of life and no one avoids them, it’s just an element we all face one way or another. We make bad decisions and face the aftermath or we make good ones and sometimes even then things don’t go the way we want them to. Its life and I personally I love life no matter what comes at me. I literally am grateful every day I get to wake up and keep on living. I know it’s a bit disgusting but it’s a fact.

                On that note I have moments as an autism mom that I stay very quiet but on the inside I am completely torn up by what I see my son go through. Kids struggle and Lord knows my two older children who are not autistic have faced some real and hard struggles, some of which have broken my heart to see them go through but they have been able to push through with grace. Couldn’t be more proud of all three of my kids for everything they are but in regard to autism those moments can be a little different that tear me up.

                This morning my son was anxious and wanted to leave an hour early for the center. We couldn’t but he wanted to get dressed and he said outside. I thought maybe this morning he was going to stick it to own routine so to speak. Our morning routine never changes so if it is a day he is going to change it; I jump and let him try. We got dressed and I opened the back door but he didn’t move from where he was standing. So, I stepped outside in the backyard and showed him a toy I bought him yesterday to play with out there. It’s beautiful out today and nothing would have prevented a child from going outside. He walked over to the door way and he stopped. I cheered him on to come out and play but he rubbed his eyes and the bottom lip came out with no loud cry or even a sound. He then stepped behind the sliding glass door so I couldn’t see his face while he fought the tears. Autism prevented him from going outside.

                This tears me up inside even though I know he will overcome. It is a very painful thing to see your child not able to step outside simply because autism says no. He didn’t cry in pain or anger, or even frustration. He cried because he just could not figure out that it was ok to do at that time of day. He is three with sun shining and a new toy one step away and couldn’t do it. A moment like that gives a parent a very clear view of how hard the days really are for a child who struggles with this.  It physically makes my chest hurt to see him go through it and in all honesty and my spewing of positivity it’s a moment I get very mad at autism.

                So where is silver lining and there is one, my own mind won’t let me not find it. After the center we are going to completely shake up routine. We are going to the park, a new one, and we are staying as long he wants to. The silver lining is I can see routine is holding on to tight and we are going to loosen the grip if we can. Shaking it up is almost like climbing over that autism wall to freedom for a bit and it can go one of two ways. It could make it worse or it could show him autism is not always in charge. Odds would say he might get worse but if we did everything based on odds he would not even be speaking today. Typically I would never tell someone to change the routine because we all know it’s asking for trouble but at the same time I often think the routine gets to set in and brings him just as much trouble as changing it might. Maybe routine is good but to what point has it gone to far?

This is autism and not even close to the severity some families face.

                It is hard for people to understand why a parent cannot just leave a child with autism in the care of someone else and go have some fun. It is possible of course but there are times things take a complicated twist and lately we have a complicated twist that has developed.

                It is impossible to predict a new behavior and often impossible to know how or why it came to be. It can feel even more impossible when it comes to easing out of the behavior because much of the time it’s just a waiting game. The behavior could vanish as quickly as it appeared. Lately we have something going on that even big sister and brother are having a hard time grasping because it truly does not make any sense…to any of us. To Phillip it seems to make perfect sense, he just can’t explain it.

                It’s a tiny detail problem and if someone walked into the house and messed with the tiny details without knowing all hell would break loose. My son has decided certain things are to stay in place and he has always kind of been this way meaning if he put a toy down, he might have a reason for it being there. He can’t say what that reason is and someone takes the toy and puts it away. He would retrieve the toy and put it back in the designated location and not just for the day, sometimes weeks. This has never really been a problem or caused any anxiety for him, he just puts it back. Now we have moved into an intense level of this issue.

                An example of just how intense this has become for him would be placing his juice on the counter. Someone moves the juice just slightly and he panics but moving it back does not ease the panic right away. If he has a toy in a certain place and it is moved just slightly or sometimes even touched which could potentially mean it has been moved anxiety kicks in. No one knows what items around the house this behavior is connected to until it’s moved or touched. On top of that his independence is spiking which is good thing, until I pick up a snack he has placed on the table and ask him if he wants it. He wants to get it himself and I moved it so the independence and tiny details are working together as a concentrated force that has the rest of us walking on egg shells.

                We have avoided meltdowns since this issue has moved in on us in the past week or so but I am also with him every day and I understand this is happening. I will say we have narrowly avoided meltdowns because many times I have stood there thinking to myself, please come out of it before you are too far in. He has been able to do that thankfully and for now but if this sticks around and grows any more intense we are going to have some serious chaos around here. There have also been many times this has confronted his big brother or sister and they are left looking like a deer in the headlights. If I was not in the room to see what might have moved, no one knows what happened. It’s a behavior the three people in his life who know him better than anyone nearly can’t keep up with.

                This is autism and it’s not nearly as severe as a challenge as many families are facing every day. It’s confusing, impossible to know why, and we wait for it to ease off. Along with some praying it will actually ease off because it might not. It is exhausting and confusing to everyone and when I say everyone I include my son because the anxiety he feels he didn’t ask for. Having to take that anxiety that hits and push it back to avoid total meltdown at three years old takes an enormous amount of self control. That is not autism, that is my son fighting back.