Awareness, acceptance, and action. One doesn't mean a damn thing without the others.

               Autism awareness, acceptance, and action are three things that come up a lot and can spark some debate. This debate is always odd to me because some people feel very strongly about one or the other when we should all feel very strongly about all three.

                Autism awareness is strong and has become even stronger since I began writing this blog back in July of 2012. Everyone has heard the word autism in one way or another and we always run into people who know someone affected or is affected themselves. Its autism awareness month and the blue lights are all over the world. Seems awareness is all over the place and can’t be ignored right? No, not right because if my child is on the ground at the grocery store screaming, which doesn’t always happen but it happens, the people walking by are first looking at him and then they shift a dirty look to me. One woman last week said to me as she walked by, “aren’t you going to pick him up?” because I was standing next to him waiting for him to calm a bit before I touched him. I ignored her and didn’t respond by saying he is autistic because I don’t want my son to hear me explain to every person walking by this is the contributing factor. I was there for milk and it was a much bigger event than I anticipated, her comment was not welcome. I could have used the opportunity to make her autism aware but at same time my child was in crisis and getting him through was my goal. If I was that woman I would have been aware autism could have been a factor simply because I am involved in awareness. I also know because autism is so prevalent that woman may not get through life without being affected or becoming aware at some point.

                Autism acceptance is necessary because it is so prevalent. There is no way to become non autistic and you can’t parent a child out of it, you can’t medically treat a child out of it, and you can’t ignore the fact things need to be handled differently. Parenting is different with autism and medical care is different in regard to how a doctor chooses to approach a child with autism. Education has to be approached completely different and if all these differences are accepted the life of someone with autism drastically better. Before you can truly make a difference you have to accept everything is going to be different and being different is ok. A person might even have to erase everything they thought they knew about raising a child and start from scratch learning from autism as you go. It is an entirely different process and accepting that helps the process move along. If the women in the grocery store were autism aware she would have accepted the fact I was actually doing exactly what my child needed me to do because I can’t force him to not be autistic. If she would have stuck around 30 more seconds she would have seen him get up and keep moving.

                Action is a big one and every person wants to see this happen no matter what. Resources are not at best and for some almost impossible to find close to home. Again medical providers don’t always seem to understand along with being lost in regard to some physical issues. No one knows for sure what the direct cause is or how many causes there are. Lack of awareness and lack of acceptance is creating some very unpleasant situations for kids with autism and often the action towards autism is heartbreaking. Insurance companies are denying care to some families because of all of the unknowns. There is one thing now that is always mentioned in cause articles and that is the word environmental. Nearly every article I come across has that word tossed in no matter what the main topic is; even genetic inheritance seems to now hint at environment trigger. So yes, if that is the case and lately it seems to truly be, action is extremely important. Medical action, research action, action towards care and the future of people affected. We need schools, health care, and society in general to be aware, accept, and act accordingly.

                Yet every time I get online I see comments like this “we don’t need awareness, we need acceptance!”  Or “We don’t need acceptance, we need action!” What autism really needs is all three because they go hand in hand and make a world of difference. Get aware, be accepting, and demand action because one doesn’t mean a damn thing without the others to follow.

The autism no one reports in the media.

http://www.autismsupportnetwork.com/news/autism-treatment-marijuana-madness-8763721

                I have such distain for this article I didn’t even finish reading it. Here is why I take issue with this and it’s not just about Mary Jane treatment being pushed on parents of autism. My first cringe was the statement “autistic kids don’t play with toys.” YES they do, and people need to remember a statement like that refers to ONE autistic child, not all. I have a house full of toys chosen very carefully, with thought to his learning style that are played with every day. The toys I used to buy him he did not play with until I was taught by him what works.

                Not all kids with autism express the behaviors in this article and although it is very sad to know some families are going through this it also needs to be known not all cases of autism are biting, head banging, and causing harm to themselves or others. It does happen but at the same time I see a lot of these articles and it creates fear. It creates a stereotype that autistic kids will cause harm to others and themselves and that is not always true. What I don’t see much of is articles about the kindness and gentleness of kid’s with autism. In fact most people probably would be taken back by that statement because the media can’t feed on it if there is no negativity attached. Autism causes meltdowns from a busy crazy world but in our home and many others, autism comes with love and care. My son is very affectionate and craves hugs along with playing gentle and being careful with others, very careful actually.

                How people chose to medicate is not my business and I respect each person’s choice but how autism is portrayed in society is my business. Autism is not always as this article describes it and often times it’s a busy world that causes some road blocks. Often times it’s a child who can’t speak so frustration comes. There are many kids with autism who are not hitting their head off of walls or biting their moms. There are also kids who cannot play Mozart at 3 years old or score 50 points in a basketball game. They are just kids who have been dealt a different hand in life and are learning to adjust to the world around them. The media doesn't talk about these kids becuase it's not to an extreme in one way or the other. Our society craves news that is extremely positive or extremely negative but there are so many kids who don't fall into a category of intense miracles or heartbreaking behaviors. Just kids with autism and you might pass one of these children on the street or in a store with a smile on thier face. You may not even know your getting smile from a child with autism.

Just keep moving and pay attention to what life is really about.

             Tomorrow is the big day for Phillip! It has been since late May of 2012 that we have been told services need to begin ASAP for progress and a promising future for our son. Well, it has taken some other life changing events to get him services at all, and we are now on our way. I am excited for him because I know he will love going and he will be learning the things I just can’t do for him at home. He will begin 3 hour sessions every weekday with a 15 hour weekly schedule and I am very happy with that time. I never liked the 40 hour rescue schedule I was first told he needed at 2 years old, so 15 is a very comfortable number for both of us.

                I am feeling just a bit lost with this new schedule beginning tomorrow and this is why. Three and a half years is approximately 910 days and out that 910 days I can count on one hand how many times I have been away from my son for more than 3 hours in a day. My life has literally revolved around guiding him, working with him, and being his communication device. Being the person who sees things they way he does the best I can and after repeated days of this I often felt like I was becoming autistic. No, that can’t happen but the constant can make you feel like it is. The break will be more than good for me but at the same time I almost have to relearn what to do with time that is good for me personally. Many parents have a child and go back to work or have a date night. Didn’t have those options and many parents still go out with friends on a Friday night or spend the day with other adults, also options I didn’t have. People have children and are able to go back into a personal life with a babysitter from time to time and I was just not able to do that. I didn’t have support needed to go back into having a personal life until now.

                I can join the YMCA that is right next door and physically do some good for myself and I am looking into going to school to keep my brain moving forward but it is so weird to know I will have that time everyday of the week. A short time but it feels a bit like an eternity at this point. This will prepare him for school in the fall and he may stay in the autism program right along with preschool when that time comes. Kids grow up and these are things that need to happen but my routine is getting rocked and I was not as ready as I thought I would be. I knew it was coming and have known for a long time but I still feel a bit like a deer in the headlights trying to figure out which way to go. I will find ways to keep busy but what is so interesting to me through the whole thing is we are hitting a milestone where mom has to let go and he will fly a bit or hopefully soar. A person might not think your child beginning autism services would be a milestone but when it comes to autism there is no typical milestone. Every little change and every little step towards progress is a milestone that doesn’t exist on a doctor’s paperwork or developmental charts. Just moving forward in general is as important as learning the alphabet or tying a shoe. Something we all can apply to life when it’s necessary because life is not mapped out and there are no directions to follow, you just keep moving and pay attention to what life is really about.

               

Keeping up is easy! It's the thinking that is exhausting.

               We have become very restless around here and by 8:30am my little man is following me around with clothes and a sweet little “we should go” that comes out muffled but still comes out. So today I decided to take him to the mall because he likes it there no matter how much I don’t. There is a funny thing that happens when we are out in public and especially in a big place like the mall. My verbal reminders and guidance almost never stops. Right along with some physical guidance to get him pointed in the right direction if he is too focused on something.

                We walked about half way down the mall and the entire time I am saying his name to keep him close. I am consistently physically moving him out of people’s way because for one people can be rude and don’t move and for two he is completely unaware he can run into people or get ran over by people. I repeat his name over and over and use my hands to gesture him in the right direction and let me tell you this is more exhausting than one might think. Exhausting because I always have to think and keep him moving along safely. Most of the time he does not look forward and while he is moving quickly his eyes are moving all around, often still looking at something that he has passed by. I have to tell him to look out or look up all of the time and I end up acting as the part of his mind that is not doing what he needs it to do.

                Quick trip to the mall doesn’t sound so challenging doing this but this is something I do a lot. Nearly everywhere we go that is big, busy, or new I become the other part of his mind. The part that sees what he does not and tries to keep him directed. At the same time I need to do my own thinking if I can and by the time we leave, that may or may not be a peaceful goodbye, I am mentally drained. Today was not a peaceful goodbye because I turned my head for one second to look at a shirt and he took off. Once I caught him we had to leave the store because his goal was to investigate the dressing room. Not a good thing for the ladies trying on clothes and I had no choice but to pick him up and physically remove him, with a man sitting watching and giggling at his desire to crawl under the doors. That funny man probably thought he was just being a boy but what he really after were the mirrors in the rooms. That was when I had a screaming boy half my size and thankfully the van was not far away.

                He didn’t care about the ladies in the rooms in fact he may not have even noticed them because the mirrors where his main objective and right along with being autistic, he is as stubborn. Once we reach the van and I have him secured in his seat that is when I get to shut my brain off for a moment. Before I start to drive of course but it’s the moment I don’t have to think for two of us and I get a quick break. It’s not always this way because places he can run or places he is very familiar with I can relax although there are very few places like this. Home and my parent’s house are safety zones but even a crowded park without a simple fence that stops him from wandering, keeps me thinking for the part of him that hasn’t come yet. The challenge of keep up with him is not just following or trying to understand him, it is a full time mental work out. I am doing this so much it can be hard to shut my mind down at the end of the day. All kids go through this faze and parents are on guard teaching a child how to gage the world around them but the difference is for an autism parent this is not just a faze or part of the toddler years that passes quickly. This is constant and in many cases it doesn’t pass at all.

Count your blessings!

                We spent yesterday at home the entire day. Phillip began a new behavior that was one of my fears and a messy one. I won’t go into detail with it but I will say if you’re an autism parent you probably have a few things you can think of that may have occurred. If you’re not an autism parent I am sparing you from the details simply because it’s for the best. It was a day of not being able to take my eyes off of him and I wasn’t completely successful at that and hoping today does not go the same way.

                What I did have success at yesterday was beginning to create a book of pictures to order from MyPublisher for myself. A book of some of my favorite pictures that are stored in my computer from the last 4 years. I don’t look back much and not because I don’t want to, I just don’t take the time very often and I prefer to keep moving in the forward direction as it keeps my mind focused on today. I started from just before Phillip was born and going through the pictures was a bit more emotional than I expected. I remember the changes that occurred with Phillip and how fast they hit but when you see pictures before the changes it’s a bit hard to face.

                He was smiling for pictures and enjoyed the camera so there were many more pictures of him posing than I recalled. He doesn’t do that anymore and I have to take ten pictures to get just one of him looking at me or smiling. He was alert and responsive to things and I was reminded when he was just a new born at how alert he was, it was impressive. He was eating all different food and using a fork and spoon to do it. He drank from a cup, not regularly, but he had the ability. He was finger painting and getting into it without the annoyance of the paint on his hands. He was in a swimming pool full of water from the hose that was very cold, no pools these days no matter what. We put an addition on our house and his crib was in the living room. Through all the noise he slept in his crib without noticing the chaos around him. He always had clothes on and loved new shoes and footie pajamas, no clothes these days. We had a basket ball court on the driveway and he would sit on a bench and watch his siblings and their friends play ball. No sitting to watch anymore. All of these things don’t happen anymore and it was hard to look back and be reminded of a few things that have changed.

                Not hard because he doesn’t do them anymore but hard because at a point in the pictures I saw clearly when it all came undone. His face became blank in a lot of pictures and your typical milestones stopped. No more food, no more clothes, no more random people holding him, no more looking at the camera, no more messy finger painting, no more funny dance moves, and he lost his healthy chub. He was never very chubby but he did have a healthier appearance. At this point in the pictures it all just stopped, just like that and what really got my attention was the decline in people in our lives. The people in the pictures full of smiles with a little boy on their lap disappeared. Holidays were still there but most of the pictures were home and alone. It became extremely hard to just take him anywhere so I had to stay behind a lot or if I was able to take him somewhere it was short lived, we had to stay close to home much of the time. Many people didn’t understand I couldn’t just do whatever I wanted and deal with it. They didn’t understand the smallest things caused him stress and that stress didn’t just go away if we left, it stuck around for a while.

                This was actually the part of the pictures that made me a bit emotional. On top of watching the decline hit I could see in the pictures when the isolation and lack of support began. People I felt close to just stopped coming around and they may argue I could have come to them but it was never that easy once autism took a firm hold. Just getting in car at the wrong time of day to pick up one of my older kids was a challenge. Luckily I did have support on that end and another family went above and beyond to keep things moving along for the big kids. They understood that some things were extremely difficult for me to do with Phillip and stepped in for rides and daily help. Forever grateful to them for that and even though I didn’t spend much time with them myself they felt like family, because they treated the situation like family would.

 At the end of the day and scrolling through having the visual of how life changed so drastically was humbling. I often wonder if my son remembers having abilities before he lost them and I will never know but I was also grateful for the people who just really stepped it up for us without asking them to. I was grateful for the kids and their friends being so dang accepting of how hard interacting with Phillip was at times. People fade away when times get challenging but the people that don’t fade and even step it up above what you expected are one of life’s greatest blessings. We are blessed beyond words and even if those blessings feel limited at times, they really aren’t. They say count your blessings and we should but at the same time it can be the affect of the blessing that really counts.

 

Allowing him to follow his mind is very important, when I can allow it.

               Big adventure today and it was awesome. The goal of the day was to take an antique to a “specialist” and get an opinion and that goal was accomplished but it wasn’t the part of the day I enjoyed. We took a ferry over to Seattle and I have wanted to do this for a while now because even though I grew up here I haven’t actually been to the city in almost ten years. I have been very worried about Phillip being able to handle a trip like that and not being able to just go home as quickly as we can around town.

                He LOVED the ferry ride in every way. From watching the cars load, the water, the ferry moving, and feel of it rumbling under him was fascinating to him. The look on his face when we drove on to the ferry was interested and a little concerned at the same time. My dad bought some bread to feed the seagulls and even though this brought a crowd of tourists, Phillip didn’t have much of a concern for those birds eating right out of grandpa’s hands. He was on a big, moving, rumbling, water craft so birds couldn’t compete. I can’t count how many times Phillip said “o my gosh” when we first got on that ferry and that made for a very good start.

                He liked driving through the city and he liked the short walk down the waterfront that he held my hand for, while we waited for the ferry to take us home. The day went perfectly and without one meltdown! I can tell you when this happens I know what I am doing right and I just can’t do it every time we leave the house. It’s common for people to believe your child must be under your control at all times. They should follow your commands and listen to every word you say. They should do what most children do, follow directions and pay attention or that’s the idea right? No, for us it’s a bit different and I can see how some people would judge me just by watching. I don’t do this with him, I try, but not like I am expected to by society. My child runs into people, he wanders, he kicks into high gear and goes. He goes until his mind is tired. If I constantly tried to force him into a social expectation his mind would fight back and by fight back I mean meltdown.

                His mind is constantly seeking information and I learned a long time ago to let him follow his mind. He leads and I follow patiently and when I say patiently I mean to an extreme. I am two steps behind him and if he is not causing a disruption he is allowed to chase that desire for information. If I want to go left and his mind wants to go right we go right, if we can. Of course there are times we can’t do this but on a large boat there was no reason to force him to do anything but what his mind wanted to do. While walking on waterfront there were people everywhere and busy shops and at one point he let go of my hand and ran into one. I didn’t want to go in, not one bit but I let him and when we stepped in I could see what he was after. Small airplanes were hanging from the ceiling and it blew my mind in all the chaos around him he noticed them. I wouldn’t have noticed them because I was so busy watching everything! His mind reached out and noticed exactly what he loves in a shop full of stuff and on a street full of distractions. That fascinates me because I could have easily grabbed him and said no, we are not going in there. He would have never been able to show me what grabbed his attention and I may have thought he was just trying to run but he had a reason for letting go and wanted to show me. He got a plane out of the deal to so there was a perk and we could have left without one peacefully. He touched it and that was enough for him. I personally wanted to get him a plane and he never wants me to buy him a toy, he really just wants to investigate it and move on. He honestly doesn’t care if he gets to take it home or not.

                On a daily basis there is no way to always let his mind lead the way. I can’t take him into a grocery store and just let him run or go after what he wants. There are so many times in life there is an order and you have to be able to pass distractions and it’s something he hasn’t figured out yet. He is working on it though and I have watched him pass distractions lately. It’s not easy for him and sometimes just allowing him to touch takes care of it and he can move on. On the other hand he can’t touch everything and he can’t always go where he wants to so I do have to step in. I really love the days he can follow his mind and do what he needs to do. I see how it helps him get through the event and that extreme patience doesn’t seem very extreme because the payoff is worth every second of it. It just feels like doing what he needs and that’s my job. It’s also interesting to see the faces of others who are clearly wondering why I just allow him to do it.

 There was man on the boat who was trying to get him to look at the birds and that man said to me “he doesn’t seem to care about the birds like the other kids.” No, and he doesn’t have to. It may seem odd for people on the outside looking in to see a child who isn’t doing what is expected but to an autism parent seeing a child do what is expected seems odd after a while.

A world I refuse to let him be alone in.

                  In these last few years I have learned I wasn’t living right and I don’t mean doing it all wrong, even though I could probably say that to, I mean taking it in wrong. Getting out of the house has new meaning and taking in the days is different now. I used to live like I was really going to grow old and I had plenty of time to pass things by and possibly notice later. Not so and my sons attention to detail and struggle with becoming overwhelmed woke me up.

                We are going on an adventure tomorrow to the city with my dad and I can tell you I feel like a little kid. I am excited to ride the ferry boat and excited to be in the chaos of the city for a bit. I am excited to do something I normally don’t get to do and really haven’t done in years. I literally can’t wait! The same reason I went to church yesterday with my mom, because if I didn’t I would miss an opportunity. Not just to do something I normally don’t do but to spend that time with my mom. I literally enjoyed every second of that moment in my life just because I was able to have it.

                I have been through a lot of different difficult events in life and I can look back on them and think they should have woken me up sooner. I have literally had things happen to me I am very lucky to have walked away from alive and still I didn’t take in life right. I just kept going the very same way I was before that experience. I went through a custody experience with my older kids that literally made me hate life and I overcame it, we all did. I have rolled a car off the side of a mountain fracturing my face, landing upside down and walked away. I have been attacked by a mad man in my own home and overcame my fear with time. I could really name a few more events that should have changed my views on life quickly but those three stand out in my mind. I woke up a bit with these things and found strength to move forward but I can’t say any of them forced me to really see life how I needed to.

                I have also had awesome life events that should have changed my views on everyday life and they did for a time. The gift of my kids, each one is impossible to even put into words it’s so awesome. I have endless blessings and miracles granted in my life. I had the love of my life which many people never find and I was granted the most amazing family right from the start of my life with the gift of being adopted, a gift that also led me to another amazing family I am blessed to be a part of. Again I could go on and on with struggles and miracles given to me but I still couldn’t see life how I needed to.

                The day I was told one of my children would struggle every day just taking in the smallest details I had taken advantage of my entire life finally woke me up. Everyone faces challenges in life and difficulties come no matter what but when you are told things as small as a bright light or a loud noise will be one of those difficulties it truly humbles you in a way you never expected. A crowd, a movement, a large room full of objects, the wind blowing, the feel of rain, the tone of someone’s voice or how tall they are, the feel of clothing, and even the smell in the air is a challenge and I had spent an entire lifetime not even noticing these things. The things I had never even noticed in all of my struggles and miracles are a huge element in my son’s life. I don’t go a day without noticing these things anymore and I literally take in life like every element matters. I get excited over things most adults might not and not just because I am isolated at home a lot, although that does makes a difference to, because the word autism forced me to notice. I am not grateful my son struggles with these things and I wish he didn’t have to but I am grateful that I am not going through life missing them anymore.

                The things I thought were huge challenges were not so huge and I don’t look for big miracles anymore because I now see the little ones that matter just as much or more.  I try to take in life the same way he does when he fights back, like that moment matters because the smallest thing matters much more than I ever understood in all the years I was not even close to paying attention or appreciating how easy the days really were for me. I finally woke up and if I hadn’t I would never have been able to understand his world. A world I refuse to let him be alone in.