My autism parent transition, another one.

   What a wild ride autism had been for the past year and I can't count the changes both good and bad that have come our way, it actually overwhelms me to begin thinking about it. I stepped way back from the cause lately and as a mother and autism parent I am going through a transition with my feeling towards autism. Not my son but autism and how it impacts him because the impact on him has changed so much in a very short time. He is doing very well and constantly making progress. Daily he speaks more and every moment I watch him win is awesome, a lot of moments lately and we celebrate like crazy.

    Yesterday we went to an event called Whaling Days in our area and what I watched happen will explain my transition and feeling towards autism. Whaling Days is a very crowded and noisy event that is packed onto the waterfront. There was a carnival, a band playing, helicopters taking off, street vendors, food vendors of every kind, and boats lined up on the dock. I knew this was an event that would be hard for him but at the same time he is missing to much of what is basically set up for kids and families to enjoy. Honestly I am missing it to and it gets old having to stay away. I want to be able to do family fun events with my son.

   Here is what happened to him when he merged into the crowd. He lost all sense of safety, could no longer hear me, was startled by all the sounds, was running into people, was confused, and began moving extremely fast in all directions. Somehow I managed to get him to the pier because he loves the pier and we stayed on that pier moving constantly most of the time. The problem was the boats, people, and music stopped him from being aware of his surroundings. If I had not been right on him three times he would have gone off the pier and into the water. Not on purpose but from not looking where he was walking and running into people and objects. His focus was completely gone and what others saw as a high energy child that was excited was actually a child who could not calm down and was in a state of anxiety. He could not ride any rides even if he wanted to because he doesn't grasp the safety of sitting still and the movement would have terrified him. We could not get anything to eat or drink because standing in line in a crowd was not an option. We could not watch the band play because the sound was to much even from far away. You might wonder why I would even go if all we could do slow down and enjoy the fun. I needed to see how he would handle it and I sure was given a good look at how hard it is for him.

   We stayed at this event for under an hour and on the way back to the van he began running in all different directions trying to find a way out of the chaos we had to walk through. If I touched him he grew upset and if I spoke to him I had to get right in front of him at his level and repeat myself to get him to hear me. Finally I told him "It's time to be a monkey" and he knows this means to climb on my back and hang on which he did. The van was only 2 blocks away and before we hit the second block he was a sleeping monkey. He was not tired one bit before we went but that short time of coping with the situation completely exhausted him and it was all due to what autism causes for him. Before he climbed on my back I could see he was loosing energy to even lift his legs and keep moving.

   I have had people tell me autism is a gift or it is part of my sons identity but when I see him go through this kind of anxiety and struggle I do not feel autism is a gift and surely don't feel that stress he feels is part of who he is. My transition as is mother is frustration that he has no choice but to face the world this way. My transition as an autism parent is autism hinders my son from being able to let go and just be a little boy at times. I know my son was not born with autism and we all know there is an environmental trigger in many cases caused by human beings not mother nature. It flat out angers me to think about all the families and children who go through this same scenario and it might not have had to be that way. I love every single thing about my son and the fight in him is amazing, inspiring, and he is my teacher but I don't think I will ever have to explain to him how autism impacts him. He feels it and he is going to spend most of his life showing autism who is in charge. he worked very hard to do that at this event and prevented himself from breaking down at three years old. That fight in him along with me understanding his reactions to a stressful situation is what is getting him through. He consistently fights with autism to be able to do that and he consistently fights with autism to show me his own identity. Autism is not a part of his identity, it is something he is at war with and with the right understanding, help, and encouragement he is going to kick it's ass. Slowly and it might takes years but I have no doubt he will.

Even Jesus was a Toddler

   Yesterday my son and I stopped at World Market and it's one of his favorite places to go. Lots of breakables but it never worries me because he is actually a very careful child. The reason he loves going there is the toy selection and I agree with him because all of the toys are battery free and old fashioned toys that require thought. I like that and I prefer old school to the way times have changed, especially when it comes to how kids learn and play.

    He was wild and all over the place so I had to work a little harder to get through the store with all eyes beating on us. I could feel it and even though no one was rude, people don't have to be rude to be clearly judgmental towards you as a parent. It's the slow walk and stare at your child approach I see all to often. While I was paying my son picked up a vase and when he tried to put it back it fell over and rolled onto the floor, shattering. Of course this event caused everyone to stop and watch that mother with the high energy, not listening, unruly, tantrum throwing child who broke something because she isn't doing her job. Not exactly correct but that is what most people would see and the fact I didn't get mad at him probably made some of that judgment worse. It was an accident and honestly he wasn't very happy with what happened either. So, I quietly paid for the vase and we left, eyes still on us because he had already thrown two tantrums over being told no before the incident happened. He had already grabbed judgmental eyes just being three.

   I have reached a point with my son that I guess you could say I have let some things go. Some things being the way I am told he needs to be, the way he is supposed to act, and the way society has decided how every child and parent are supposed to be. To me it's all complete crap and so is any form of judgment that shoots our way.

   My son is three years old, stubborn, smart, autistic, and testing the world. Testing limits, boundaries, the environment, and top of the list he is testing me. That's what kids his age do and they don't stop, the tests just become different with different ages and stages. He throws tantrums (aside from meltdowns) and he behaves like a three year old would or should. He is definitely a challenge and I have to really work to keep up physically and mentally. I read last night there is a disorder now that basically suits kids who throw tantrums called, Disruptive Mood Dysregulation Disorder. When I read about it all I could do was feel very very bad for the state of our society and the kids growing up in it.

   Disruptive meaning what a child is doing is an annoyance. Mood, another word for how one might feel. Dysregulation, a fancy word for not being normal or regular and disorder is basically another word for mental illness. How in the hell have we become a society who has allowed our children to be considered mentally ill for acting like children? Is a childhood tantrum so completely out of line it needs to be addressed with a label ending in disorder? Have we become so blind and confused that we don't even understand how kids can be anymore? I heard an add on the radio a couple of weeks ago for ADD or ADHD and the add claimed a video game could help our children fight back the symptoms. Similar to so many adds for autism I come across. I turned the radio off right after I heard it because we live in a society that is hell bent on fixing every single personality and shaping it into some kind of extreme order that actually doesn't exist. If it did we would all be walking around exactly alike. How entirely boring would that be and impossible to ever make happen.

   My son throws tantrums and a lot of them are not associated with autism at all, they are because he is three. Six months ago he did everything I told him to when I told him to and I will to say it was easy, I was blown away by it. As a parent I kind of felt like I was getting by pretty easy but that has changed. I am glad to see it because it shows me he has a strong personality of his own that is busting through and challenging me is not something I see as a bad thing. Of course I challenge him back and want him to understand I am the mom but I don't want him to go through life doing everything he is told when he is told to by everyone. I am just his first test subject is how I see it and I am thrilled he has found that part of him, he is going to need it in a world full of confusion and people who might sometimes be wrong. People who have decided all children should be acting a certain way and conforming to a standard no one will ever live up to and adults face the same pressure.

   I don't know who is coming up with all of these childhood disorders and calling so many kids mentally ill for being kids, but I would love to have a sit down with some of their mothers. I would love to ask them what raising these people was like. Someone said to me last year after my son had completely broken down in a grocery store and at the time I felt embarrassed by it and frustrated he wasn't behaving himself. They said "even Jesus was a toddler" and that comment never left my mind. It also erased my embarrassment and I suddenly was embarrassed because I had completely forgotten that my child didn't have to be perfect. Even Jesus was a toddler and so were the people who are creating so many mental illness guidelines that apply to our kids. They had tantrums, challenged their mothers, probably caused a few public scenes, struggled in school in some way, had mood swings, and made it all the way to being an adult who could write the guidelines for things like Disruptive Mood Dysregulation  Disorder. I guess you could say they made it to being a successful adult depending on how you view success. I am no therapist and my opinion is irrelevant but I know I am not the only person tired of seeing children diagnosed and medicated for everything under the sun. It's out of control and when I read all of the stories I have I don't think it's children that are out of control, it's adults with an idea of what control should be and it's no good.

It's ok to cry, one day he will jump!

   The dreaded mom breakdown! If your a mom and have never had one of these well you must tell the rest of the mothers on earth your secret to completely holding it together always. I would be shocked though if a mom like this exists. Autism or not, every mom feels pressure, feels doubt, feels overwhelmed, feels judged, feels exhausted, and feels like she will keep doing it no matter what because it's what she does. I don't know a mom who hasn't burst into tears at some point over one of the feelings above at some time during motherhood, not any good moms anyway.

   Being an autism mom makes not one bit of difference when it comes to this topic although I think I can say a lot of autism moms cry and cry a lot. It's hard and we know it, we would be lying if we said it wasn't. We had a weekend full of meltdowns and full of routine changes, not big changes just a couple of new things tossed in we don't normally do and well when it comes to autism this can cause big challenges. We made a trip to our local dump with grandpa in an unfamiliar truck, then changed to grandpa's car to go home. All of it not part of our daily routine so arriving home left my son full of extreme anxiety. Crying, screaming, kicking clinging, and a relentless attack on his comfort level. Eventually I decided this attack was not going to stop until we did something very familiar, almost like attacking it back with what his mind craves, routine. Into the mini van we went and back to grandpa's house for just a short time. When we returned home all comfort was restored but he was exhausted and it effected him all day.

   The next day we made a simple trip to Starbucks to see old friends and this is something he has never done. I could see from his extreme energy and could hear from the sounds he was making his mind kicked into overdrive and knew we would both pay the price later on. His mind was so busy the only way back was via meltdown at that point. That's hard to understand but it's almost like he has to crash and burn in order for his mind to stop at times.

   That is exactly what happened and once again the screaming began. Now at this point motherhood kicked me and I did the unthinkable. I cried and I cried almost as hard as him. This happens to moms and I can say when my big kids where little and I was exhausted I cried a time or two as well. Not a sad cry just a cry that wants to fix it all. Moms often have to turn there backs when a child is upset so a child can work through that feeling and understand how. Maybe a child is mad about going to bed or mad they can't have a toy so a tantrum begins. Sometimes it's just an age and eventually they learn to manage what works on mom and what doesn't so it gets better. That doesn't mean it's not exhausting.

   There was a difference though between my cry now and my cry back then with my other children. You see it wasn't exhaustion because I am not tired, pretty well rested actually. I am not frustrated with behaviors or any stages he is going through. What this cry was is simply heartbreak and not a constant heartbreak, one that hits occasionally just because of how hard autism can make life for him. You see the thought that my son can't simply do something new or different without extreme anxiety breaks my heart. It is very hard to watch a little boy struggle through a very simple change to the point he has to crash. As a mother that hurts to see and hurts to know I cannot do one thing to prevent it. It is totally out of my hands. I can control his environment and I can gage what he can handle in the way of crowds or noise. I can decide if something might work or might not but I cannot slow down his mind and ease anxiety over changes.

   It's is perfectly ok to cry and this is how I look at it, I am horribly afraid of heights. I cannot even climb a ladder or stand on a chair without feeling fear. The higher I go the more fear I feel. If my mother had to strap a parachute on me and push me off a cliff nearly every day in order to for me to learn not to be afraid...I would be very concerned if she did not cry at some point and because I know how much my mom loves me, I know she would cry the very first push! At the same time if she knew eventually I would jump on my own she would still do it if she had to. The changes are scary for him and being he is only 3 understanding those changes makes it even more difficult for him. So, if I can't always fix it and I have to push occasionally we cry together and one day he will jump.

Put the bus add back up and don't forget no two cases are the same.

 http://www.sfgate.com/news/article/Seattle-Children-s-Hospital-pulls-autism-bus-ads-4654573.php


   Lately I have felt pulling back from the blog was a good idea and I have done that. Also disconnecting a bit from the online world because real life needs more connecting and I intend to do just that but this morning I heard about the story above on the radio returning home from dropping my son off at the autism center. I have to tell you it really bothered me.

   Here is why, advocates were angry about the add on the Seattle bus putting autism in a disease category and had the add pulled with an apology to boot. What a ridiculous thing to do is all that entered my mind and the reason is we cannot deny that thousands of families face extreme troubles on a daily basis. We cannot deny that thousands of kids are inflicted with numerous health problems, seizures, and total lack of being able to take in the world around them. We also cannot deny some kids are coming out of autism or rather making amazing progress and what we could say is healing over time.

   Disability or disease? How can we as advocates decide what autism is for some families? How can an advocate deny the fact that autism needs attention in the worst way from the medical community and science? Maybe the add could have been written differently, wipe out probably wasn't the best choice of words. Solve would have been ideal and maybe that would have calmed some people down a bit but in this world, maybe not.

   Here is a an example of a person these advocates didn't consider in there quest to remove autism from the bus. A young mother with an autistic child. She isn't sure if he was born that way or if something triggered it but she knows he was fine up until a certain age. All of sudden her child has numerous allergies, the child nearly cannot have a bowel movement but once a week, the child can not longer control tantrums or outbursts, the child no longer sleeps but two or three hours a night, will not eat but a selection of three foods. None of which are healthy and no matter what she tries nothing works. Her child cannot speak and because of that she cannot leave her child with anyone. Her days are spent trying to figure out the ups and downs of autism. She sees food plays a big role and yet doctors have not one answer for her. She is told genetic with a possible environmental trigger and we can say cancer or diabetes follows that same pattern to a point.

  Autism is up 74% in the ten years and the medical community has not one answer for families who need it. It is a bit disturbing to me a group of advocates would ignore the reality that autism needs more medical attention and would be offended by an add on a bus. My son is autistic and not only would I be glad to see that add but also feel a little relief the cause is being pushed medically to be solved. Different wording so not to offend would be wise but to have it removed all together is to have the attention pulled back from what so desperately needs it. There is acceptance and then there is lack of site into lives so greatly effected. We cannot disconnect ourselves from children and adults that are truly suffering or advocating for autism doesn't any good in the first place. It doesn't matter if a person believes it is flat out genetic or something caused it, either way if no one knows for sure so who gets to decide what autism really is?

   I personally don't see my son as disabled or diseased. He is a boy fighting to be understood. You can be damn sure I would like to go into a doctors office and not feel as though I was just the educator on autism when I walk out. I would like to be able to take my son in for a doctors appointment and have some kind of resolve to a challenge when we walk out instead of medical providers being just as, if not more confused than I am. Then again I can barely get my son into the building let alone a doctors appointment because the touch of strangers frightens him. I say put the bus add back up with the words "Solve cancer, diabetes, and autism" and let it role.

Grief...No. belief...Yes!

   The subject of grieving has come up since my son was diagnosed and to me this is an odd subject. I understand the concept of grieving when a child is diagnosed but I have an inability to do this. In fact a year ago when an advocate insinuated I was a grieving mother, I was more of an insulted mother.

  I want what is best for all three of my children no matter what that may be in life. People often have an image of what there child will become and that image is almost always above and beyond like they have just given birth to a superstar. Yes, we all give birth to superstars and while we are raising our little superstars we want them to have morals, standards, and be generally good people to themselves and to others. We want them to have success doing what they love and we even want them to have a few failures so they can learn to keep trying and the ability to be humble. Autism doesn't stop a child from this and unless there is an expectation in place that is totally unrealistic I don't see autism as something that will prevent my little superstar from learning the things I feel are important. We must have an expectation that suits the circumstances in order for them to be met in the first place. When all three of my kids where born I didn't put much thought into expectation because all I could think was, wow! Then came the part I just wanted to be enough for them.

  So when someone tells me I am supposed to grieve my son for not being what the world would expect I find it very strange. Strange because it is not my son who has let me down, it is society and they we treat others in general along with complete lack of explanation for why so many children are struggling to just speak. The way the autism stigma takes hold and people shy away from learning and understanding. For that, I grieve society.  Autism came along and unexpected challenges came with it but beyond that he is my son. He is no less than what I expected of him because when he was born all I could think was, wow! After the wow to be honest I wing it every day and pray a lot. So far that has worked out for the most part with a few bumps in the road but grieving has never come to mind. If someone told me they could stop all of the challenges my son faces from autism I would take it and I would take all of the challenges away my other two children face because no one wants to watch their struggle through anything in life.

  If a doctor or therapist says to me, your son has autism do I grieve him? No, I adjust to what was just presented to me so he can thrive in a world that might not understand. I might ask the doctor or therapist questions he or she cannot answer and then grieve there degree hanging on the wall but I surely will not grieve my child.

   This might seem odd to some people but I was also a child who grew up in a family that stood out for being a bit different. A life of irrational decisions, almost no direction to speak of, and didn't accomplish the things I was capable of. I was and still can be the daughter who just never did figure out how to focus my abilities and use them. If I was to ask my parents if they have ever grieved me I would hope the answer would be no although I am little afraid to ask that question, just in case. What I am saying is, grief for me is associated with loss and I have not lost my son. He is with me, he is challenged but we are all challenged in some way. Focusing on what could have been doesn't do tomorrow a damn bit of good and changes nothing that has already been. Grief? No, but belief...yes.

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.