Autism Can Only Be Explained Two Ways

     Two years ago my son could barely function. He tested right in the middle of the spectrum meaning he wasn't high functioning or low but right on the edge of both. He had no method of communicating other than body language which meant a lot of screaming and daily meltdowns that often lasted for hours. He ate very little and only drank if I placed something his hands and told him to. Largely due, I suspect, to a mess of a digestive system that caused him debilitating pain. I couldn't take him anywhere and when I did it almost always ended badly and extremely fast. I couldn't leave him with anyone for more than 30 minutes and whoever I left him with was in a state of anxiety hoping I would hurry back. Clothes, blankets, and shoes, all irritated him and just the feeling of a blanket on a cold night would wake him. He barely acknowledged anyone who spoke to him and just simply getting him to look at me was a challenge. He didn't touch anyone other than who he lived with and even hugging mom was few and far between. He was a wanderer to a point I couldn't leave his side because just saying his name to get his attention was irrelevant. He didn't have the ability to respond to his own name and people would ask me if he even knew what his own name was. I would say yes, but I was only 99% sure of that. No indication that he did, I just couldn't believe that he didn't.

  When I describe the state he was in to people quickly I say, he was gone. Just flat out gone and autism had a vice grip on him that I wasn't sure would ever loosen up. I wanted to believe he would break out of his trap but I honestly had nothing to go on saying he would other than time, patience, and extreme faith.  Along with a small handful of advocates who thought he could but I wondered sometimes if they were just taught to say positive things.  I also if I would ever even hear my son say "I love you" because he was completely non verbal.

    Today he speaks. He eats when hungry, drinks when thirsty, and that mess of a digestive system is no longer causing him pain. I can take him places for long periods of time and just know at some point he will have enough of it but it's never within minutes of arriving like it used to be. Meltdowns of course still happen but they are not every day and sometimes we go weeks without. Clothes still come off in the house but he keeps them on in public without an argument and every night he pulls the blanket up to his neck, says "I love you" and falls asleep. He acknowledges people around him and pays close attention to them, making eye contact without stress. He knows, responds, and can tell people his name along with giving high fives and hugs to people he used to retreat from. He has been able to show his sense of humor, his likes and dislikes without screaming in protest. He wanders but I am no longer super glued to his side directing him or keeping him safe every single moment because he has some ability to turn around and come back or follow. The last year has been watching my son slowly introduce himself to us and manage his own autism enough to shove the word aside and live life in a way we are not missing everything. It might be cut short but that is way better than not at all.

   Is he caught up with his peers? No, and two years behind but when I have a paper in my hands full of charts telling me where he is at by comparison, I look it over once and never look at it again. If I wasn't in a room with a therapist when it's handed to me, I honestly might not look at it at all. Does he struggle socially? Very much so but the progress he has made makes it much less of a concern. I still have to be cautious and I help him communicate daily. None of the things above have come easy but they have come and that's all that matters. Instead of fearing a trip out of the house, especially to do something new, I am excited to have the experience no matter how small it may seem to someone else. Like we are both four year olds on a new adventure because being able to break out of isolation is amazing, not easy, just amazing.

    I am not writing this to tell everyone how my son is doing but to make sure a parent out there who has locked themselves in the bathroom for just ten minutes to have a cry knows things change. Knows that stacks of charts aren't going to determine how patience and love will pay off or who your child is in this world. So that parent who has just left a grocery store with tears in their eyes and a screaming child knows one day you might get in the car with a smile giving a high five for rockin that quick trip in for milk. So that parents who can't get their child's attention know one day they might respond and look you in the eye while you speak. So a parent out there believes one day you might hear "I love you" with clarity. Believe just because autism won't let the words come out doesn't mean a child is not fighting every day to say them. So a parent out there who feels consumed by a diagnosis knows it's not the end or even a indicator of what's coming. Yes, it can be hard and yes people can be rude with a lack of knowledge towards autism but none of it matters the moment you see your child overcome something that was predetermined they might not. People will say autism is just a word but it really is a big piece of life and watching a child fight through it can be only be explained two ways...Overwhelmingly heartbreaking and overwhelmingly heartwarming. Somewhere in the middle you have to find a little peace, no matter how small it may be because it moves everyone forward knowing there is so much more to come.

When Autism Comes to Dinner

   Autism can have an affect on the entire family and the way we all prepare for events, even the little ones. Yesterday was my oldest son's 15th birthday and trying to find some kind of fun we could have for the day was a difficult task. Not because there are no fun things to do but because I have to consider how those things will effect my youngest son. I had many things going through my mind as ways to spend to spend the day, zoo, aquarium, trip the city, all things I had to take into consideration might end up a huge fail. The what ifs start to flood my mind and although I hate to say it, the what if was what if it all goes wrong and my son's birthday is taken down by his little brothers autism. Not by his little brother but by how he is overwhelmed so easily. He loves his little brother like crazy but we are all very familiar with what could happen.

   I asked my son what he would like to do and not many ideas rolled out. I don't know if that was due to what may come of it or just lack of interest, after all he is 15, so lack of interest is realistic at this age. What he decided on was a simple trip out to dinner and I use the word simple lightly because nothing is ever so simple with autism involved. He chose a place we had been to as a family once before and it did not go well. Red Robin and Red Robin is loud and busy with a lot of things to process. At the same time there aren't a lot of places to eat he could have chosen that wouldn't have been loud and busy. The good part was we had been there before and although it ended badly I knew Phillip had already processed a lot of the restaurant once and that makes a difference. He just does not forget so a second introduction is never as difficult as the first.

   This is when the biggest affect kicked in, the mention of possibly leaving my youngest behind to avoid what might come of it. My oldest, Presly, knew we had a 50/50 chance of dinner ending very badly, early, or me just flat out having the leave the other kids at the table to explore quietly. It has happened so many times we all know this is part of the process. A sit down restaurant just does not happen often as a family because it's hard. I understood where he was coming from because I also feel the same anxiety and it was a bit heartbreaking to know leaving one child behind for a birthday dinner was truly floating around in our minds and yes, I had already considered it myself.

   We did not, we all went and today I am extremely grateful we pushed through that concern. You see Phillip often surprises us and yesterday was one of those times. The hostess first wanted to seat us at a round table and I quickly knew that was a big trigger for challenges so asked if we could somehow be seated in a booth. The booth is much easier to keep my son from wanting to wander off or run away from us to explore and she gladly did that for us. Thankfully she found us a booth tucked into a corner which was another blessing because people all around him in every direction talking and moving is just another trigger. The corner prevented the noise and movement from flooding his mind. A table in a restaurant that is wide open and in the middle of all the chaos is like inviting autism to come out and play and sometimes autism doesn't play quietly or in a designated area.

   What came of this birthday dinner, other than an obscene bill, was a fantastic dinner with a fantastic group of kids. Phillip sat with some crawling around and a couple of attempts to escape but for the most part he was more relaxed than any of us expected. The dinner was full of smiles, laughter, and the birthday young man was able to enjoy his birthday burger just as he wanted to. For the first time possibly ever, we slowly finished our food and then sat for a bit talking before the bill was paid. That never happens, we rush and often no one really finishes. Many times someone has to lead little brother out of the restaurant before the bill even comes. Challenges are always pushing when autism comes to dinner but yesterday autism was not in charge and having Phillip with us in such a state of peace was like life giving his big brother a special gift for his birthday. Even showing us all leaving him behind would have stolen a moment we didn't know was coming and I don't think any of us would have wanted to miss it for the world. We need those moments as a family desperately because it reminds us to keep fighting together. It also reminds us that when we feel defeated, we are not.
 
   We have pushed through some very hard things together and every second of it makes a difference. Not just for us as a family but for a little boy who doesn't deserve to be left behind. He needs to be there and at the end of the day I was a bit upset with myself for even considering leaving him behind. We would have missed one of the best moments we have had together in a very long time. Next time may not go as well but I do know the thought of leaving him behind will not crawl into my mind so easily again. In fact I think all of use had a large dose of faith restored in us and in no way want to miss an opportunity like that again. We have all worked to hard for it. I was reminded of a Disney movie that used to be on repeat day after day in my home when my older children were little and the saying, OHANA....family and nobody gets left behind! No matter what kind of challenges come we face them together because if we don't, how in the world can we ever overcome them when it really is each other that has gotten us this far.

  

If only I could turn the world down for him.

   What is the greatest challenge autism creates for my son, and really the whole family? It's not speech, not meltdowns, absolutely no self harm or harm to us, and not his eating habits. His greatest challenge is simply calming himself down in a new or busy environment. Doesn't sound like much of a challenge but it certainly is and it truly affects all of us regularly. The reason I consider it the biggest challenge is because I cannot do anything to help him.

   Yesterday we set out to buy new shoes with two places I intended to stop and look. If those two places didn't have what we needed then we call it a day and try again another time. I also had to pay attention to my sons behavior before deciding to make this quick and what should be easy outing. If he seemed high strung or easily frustrated it was out of the question but all seemed well and he wanted to leave the house. The problem begins as soon as we walk into the doors of a building and right now it's back to school time so a building full of fast moving people. Immediately his mind and body kick into hyper drive and his senses crash into each other.

  Physically he cannot slow down and begins to race all over the place, runs into people, and has not one idea of the dangers of running away from me. Mentally, processing delays begin and he no longer processes my voice. I can say his name 5 times and he will not respond unless I find a different way to get his attention. I know I have to get right in front of him to do it so I can at least grab his eyes if not his ears. Lately he becomes so hyper that eventually he will just lay down on the ground for a reboot and that actually gives me an opportunity to get his attention. Most parents do not want their child laying on the floor in a department store, grocery store, etc. but I personally see this as opportunity to get a hold of his mind. In fact yesterday at Ross after making it impossible to actually look for shoes to buy for him, the only way I was able to peacefully leave the store with him was the moment he laid down on the floor. Then he was still for a moment and I could quietly speak to him with a positive response. I was grateful he stopped moving no matter what people walking by staring at us felt about the situation.

   This hyper overdrive has grown to be a bigger challenge in the last month or so and taking my son anywhere that might trigger this is not fun. It's extremely hard to manage this and when you consider how many places can cause this, options become limited, extremely limited. Most of the family fun events offered in the community are a nightmare situation for him. Created for family fun but has the exact opposite impact. We still try but leave completely mentally exhausted from trying to help him get through. Even events created with autism families in mind are to much for him to take in at this point and at times it's frustrating. Frustrating to explain to others and frustrating to accept at the same time.

   I can help my son eat and stay healthy even with an extremely picky appetite. I can help him use words to communicate and I can help him work through a meltdown by leaving him alone but I cannot turn the world down. It's something with time he will have to learn to manage himself because the world can never be turned down to accommodate him or any of us. It has a huge impact on his behavior and it is a daily struggle. I don't avoid situations to hinder my son as some may think, I avoid because the situation will hinder him and I have at times even left feeling bad I forced him to be there in the first place.

   I was told not to long ago "Your to meticulous, and you need to let him just be a kid." A comment that made my heart sink because from the outside looking in I suppose that is what appears to be happening. From the inside looking out, the only thing I want for him in the whole world is to just be able to be a kid but autism forces meticulous. Meticulous brings him safety, comfort, and the ability to relax at times in a world that won't turn down. The definition of meticulous is extreme attention to detail and I could easily sum up autism the very same way, and it's a forced way of life so he can have those moments of just being a kid.

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.

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.

How fast can a child wander off? Faster than you think.

                Wandering is a nightmare and that nightmare happened to little Mikaela Lynch and her family this week. I will start this blog by saying my thoughts and heartache is with the family and the pain they are going through we can’t even imagine.

                If you follow this blog you know I used to live in Montana on 5 acres in the Kootenai National Forrest. I owned 5 acres but the actual area was endless miles of forest a child could have been lost in. People need to understand how quickly something like this can happen because for this family it happening in the blink of an eye. My home was one story near a river and my neighbors had a pond, two very clear dangers. One day I took my son outside to pull some weeds in the front yard. There was a single car garage attached to my home to give you an idea of distance. I was at one end of the single car garage and my son was just at the corner of the other end. I looked down pulled two weeds and when I looked back he was no longer standing there. I got up and walked towards where he was but when I rounded the corner he was gone. I continued to walk and yelled his name hoping he would stop moving but when I went around the next corner he was nowhere to be seen. My heart stopped and the panic hit. I ran down the back side of the house screaming his name and still could not see him or hear him. I ran across the yard for fear he had decided to run over the neighbor’s pond, something he was always drawn to and still not one glimpse of him.

                At that moment I didn’t know if I should run in the house to get the phone and call 911 or keep screaming. If I went inside I might miss a glimpse of him or some clue as to where he was.  I was scared to death my son had vanished into the woods and I had lost him. The entire event was not even 5 minutes but I knew he would not come back or respond he would just keep going towards whatever it was he was focused on. My voice was nothing compared to the distractions that mountain provided. I froze for a moment and God bless my black lab for walking over to one of our sheds because that was when I noticed the door was cracked just a bit. I ran over and when I opened the door there was my son standing silent spinning a bike tire. He heard me screaming over and over but it didn’t matter because he was fixated on the tire. I was lucky because the dangers that property gave us where endless and if he ever wandered up into that mountain I feared the worst.

                If I can’t see my son I will constantly say “where is Phillip?” to others and it’s not because I am smothering my child or won’t give him space. It’s because if he goes and is focused the dangers are irrelevant. Water is the number one danger for autistic children. Group that with wandering, silence, the desire to investigate and tragedy is a very real fear. Anyone who thinks a child can’t disappear this easily is mistaken. It happens quickly and as quick as looking away to pull two weeds.  Children with autism often focus on one thing at a time with intense interest. If something is in the street that grabs this focus, cars are totally irrelevant. Distance from a parent or sibling is totally irrelevant. Common dangers are totally irrelevant and many times it’s the danger itself that is the focus. In our case fire is a big one because the way fire moves outweighs the heat and its ability to burn my son. The movement of water and how water is never boring to play with outweighs it ability to take a life.

                Anyone who blames or lacks understanding for the pain and heartache Mikaela Lynch’s family is feeling needs to read this. My heart is with them as all of our hearts should be.  

Bryce is a true hero and inspired me to add a step to our routine.

http://www.puyallup.k12.wa.us/ourdistrict/news/newsdetail.cfm?NID=1422

               The Story above will make you cry and you can count on that and no this young man is not autistic. He is just one amazing boy who I would say got his mom’s heart beating just by being close to her. There is another reason I shared this story and it is a fear of mine that I think about more than I care to.

                I am not afraid of dying like I hear many parents say because they don’t know who will care for their children. I am very blessed and know if something were to happen to me my family would take excellent care of my son. They might struggle like crazy trying to figure him out but he would be loved with patience just as he is now and long term care would be excellent. My fear is if something was to happen to me at home and my son is here with me, what would he do? If I were to have a heart attack or whatever else could happen he does not have the ability to call 911 or get help. He will be 4 in October so he is young but at the same time I am not even sure he would understand why I would not be moving.

                That scares me like crazy and then I worry about if for some reason 911 is called how would he be able to understand any of it without slipping into a meltdown on top of what could be happening. Seems silly to be concerned about that but it’s a legit fear because I have no idea how he would cope with that kind of situation but I know he wouldn’t cope well.  Many kids would see mom or dad on the floor or bed not waking up and they would understand that help is needed. Knowing my child I think he would either sit with me and cry or wander around the house waiting for me to get up.  He would not have the ability to get himself a drink or food and what if for some reason he got out of the house, he would wander away without the speech to tell anyone who he is and what has happened. The thought of something happening to me that is unexpected scares the heck out of me simply because of his lack of understanding and his reliance on me.

                The young man in this story is amazing on every level and in this case both mom and dad were very lucky to have him there, beyond lucky really. His strength saved his moms heart from stopping and gave dad a moment of its going to be ok. None of us know what is coming our way in life and none of us really know how long or short our time will be but I do regularly pray I am here for my son and he does not ever have to face being here for me. At the same time this story stressed the importance in my mind that I need to create to some kind of plan even if it’s to be more diligent about keeping my cell phone close to me. Too often I leave it out of reach and at this point I can’t just tell my son to go get my phone, he simply wouldn’t do it because it’s not part of routine. After reading this story it is something we are going to instill in his life even if it’s just the understanding of getting the phone when I ask because being able to do that could make all the difference in the world if the time ever comes and I hope it never does.

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.

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.

Reminded of abilites I wasn't using.

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

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

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

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

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

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

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

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

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

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

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

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

               

Naturally good natured

               I came across a post this morning on Facebook that asked parents how they explain lying to their preschoolers. This one I had to check out and it wasn’t on an autism page. This topic has actually been on my mind lately and was very curious to see what other parents said. There were a lot of great answers that might help a 3 year old and up learn not to lie and some not great answers but all ages and a ton of parents with a lying battle on their hands.

                It’s common for small kids to begin that stage and hard to get a point across that it’s not ok. I did it as a kid and so did my brothers. The moment I knew my parents were going to take action for what I had done, I lied.  I lied as fast and as sloppy as ever to avoid punishment. I was never a good liar as a kid and I always felt horrible after I lied. Probably because my punishment was always stepped up for whatever I did and telling a sloppy lie on top of it.  Growing up in the 80’s didn’t offer any natural parenting websites for our parents to seek advice. They handled it the old fashioned way like all the other parents in the neighborhood. You felt the lie on your backside and you didn’t forget it.

                As we get older we feel the effects of a lie and we don’t just feel them we see how we impact others. We start to learn, hopefully, that lying doesn’t just come with consequences but it impacts our character. It impacts people around us and how they generally feel about being around us. We learn that a one lie is just a take off point for producing more lies and we also learn we don’t just affect the quality of our own life but the quality of others lives around us. If you’re paying attention you chose to treat the people around you like they deserve the truth because they are worth that much to you. You also chose to clear your own life of dishonesty because it’s just simply not worth it.

                So, now I will tell you my son has never lied.  I know he is not a big talker but he has actually never done anything that would call for a preschool lie. If he could talk just like all the other kids I don’t believe he would lie. His nature is just simply good and I can’t think of one time he was sneaky or naughty with reason enough to avoid truth. If someone were to ask me, “what is the naughtiest thing he has ever done?” I would draw a complete blank.  I don’t consider a meltdown at naughty and even though he is three and a half he has never done one dang thing that is bad. He used to eat dirt and I told him bad, but it was sensory related. He used to run way too far and way too fast, also autism related. Many things that some people would consider naughty are actually his mind figuring the out the world around him.

                Yesterday I thought he was being a bit naughty when I tried to leave grandpas and he was kicking and screaming, until I realized while we were pulling away we left his two small toys in the house he brought with him. Couldn’t tell me by the way so he reacted by crying and screaming. I stopped and ran in to get his toys and as soon as he had them he took a deep breath and cleared the tears from his face. He just never does anything I would say is bad or wrong that I have to step in and teach him a lesson. It truly never happens. It’s one the most awesome things about him and as much as I love it I also worry just a bit because the rest of the world is not this way. I pray he holds on to this part of himself and not just for my own parenting selfishness because he is young and I have no doubt he will give me some common challenges as time goes by. I pray he holds onto this for his own character and so the people in his life feel his quality and their own from knowing him. It is so rare to find people who are generally honest and good, they are like an endangered species.

                I don’t any advice for correcting a tiny fibber other than creating the knowledge it hurts the people you love because that really is the bottom line and I do think most kids do not set out to hurt people they love. Hopefully they just learn that is one of the worst feelings to put into your life and will work to avoid it.

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

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

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

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

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

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

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

Go on an adventure!

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

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

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

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

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

How does autism affect a relationship?

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

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

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

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

               

A little information fire cracker!

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

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

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

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

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

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

Actions speak extremely loud!

            

                Today was a boring Sunday and the weather wasn’t good enough to venture out much. I decided to go to the craft store and stock up on paint supplies for days just like today. My son won’t paint, finger paint anyway, because the feeling of paint on his hands is not a welcome feeling at all. I had intended on buying brushes but true to form the one item I forgot to get was paint brushes so finger painting was going to have to be the way of the day.

                I bought a ton of paint in every color and pulled out the muffin tin so he has easy access to it. Cleared the dining room floor and let him have at it. This is the part you imagine a three year old diving in and creating a huge mess but not this three year old. He carefully put just a dab on the tip of his finger and frantically looked for something to wipe it off with. I always want him to dive in but I know he won’t so I dove in instead hoping he would see there is no harm done and join me. We began with trees and flowers like most children like to see and he quickly became bored with my finger painting lack of creativity. It was getting hard to get his attention and slowly it was beginning to turn into me alone in the dining room covered in finger paint with Phillip wandering around looking for something better to do.

                That was when I knew I needed to change my approach. I was going with typical painting and his not so typical mind could have cared less.  It was time to turn on the classical music because he loves it and pulls in his busy mind. It was time to say goodbye to trees and flowers and I was more than happy with changing the approach because I was boring myself. I then proceeded to just make a mess and soon Phillip was standing over me watching with interest, walking around the picture and getting closer to the paint. Soon he sat down and started to touch the paint, carefully. Then he began to help a bit and didn’t appear to be too bothered by the paint on his hands. He did have a towel nearby to clean it off if he needed to and he did use it when the mess factor was too much. By the time we ran out of room on the paper his hands were covered in paint, his face, his arms, and he even had some in his armpit!

                I turned the music off and cleaned my owns hands off and this was when he realized what had just happened. The light went on that he was plastered in paint and did not like it one bit so up to the bath to ease his mood. I put that picture up to dry and the rest of the evening he has spent looking at our project and has gotten the picture down, gathering up the paints to do it again or add to it.

                My point to this story is, I had to stop what I was doing and try something that would pull him in. I had to help him forget about his worry of getting messy and focus on the chaos of the project. I am not sure without the chaos of it he would have ever paid attention. The music was a great help to distract him while he was watching and typically he loves classical to relax. I can relate to this part of how his mind works and I often see kids struggle in school because of boredom with the approach. The one thing I know my son and I have in common is a busy mind and if he gets bored frustration sets in. Or he simply walks away unfazed like when the project began. There has to be a way to be pulled in to forget the things that might cause a road block to the task. One of the biggest mistakes people make is underestimating just how busy an autistic mind is. With no words or very little it can be difficult to know but actions speak extremely loud.

                I have heard a few times from therapists the words “he must learn” and that is true he must but when I hear these words it is commonly in regard to learning to do what other kids his age will be doing. My question in the back of my mind is always, what if he doesn’t learn the way he is going to be taught?

                 

 

Well behaved kids discount, and a ton of judgment.

http://www.komonews.com/news/local/discount-for-families-with-well-behaved-kids-190466431.html

               This is a story that came up on our late night local news last night and typically I skip the news these days but this one caught my attention. At first I felt a bit irritated but I wasn’t sure if I was just feeling sorry for myself or maybe my feelings were a bit more legit than I was giving them credit for. You see we don’t eat at sit down restaurants if it can be avoided. There have been a few times we have and it is a constant struggle to keep our son in one place. I would never say he is bad but that doesn’t mean the opinion around us sees it the same way.

                If you read many of the comments attached to the article you will find the judgment parents face on this issue. You will see a mention of a charge for bratty kids and how well behaved kids at a restaurant is a sign of a “good parent” and so many more comments that cause a stir in my mind. I know people judge quickly when my son runs or can’t seem to be still for a short time but the thought people could think a parent who faces this struggle is not a good parent makes my stomach actually hurt with sadness. If being a good parent consists of making sure everyone else in the room is undisturbed, well then why am I trying so hard to raise kids who have morals, understanding, individual thought, care, a sense of others and the ability to be happy?  Apparently I have been killing myself to raise my children to best of my ability when all it really takes is to not bother anyone. Who knew!

                It’s nice of the restaurant to have given the parents something to smile about and proud of no doubt about it, but at the same time how exactly does one earn a well behaved discount? Maybe I bring my son in for a try at a sit down meal and he makes it for a bit but the food has taken forever to get there, huge problem by the way with a child who has extreme energy. Maybe he is beginning to climb out of his seat to explore because that is a given no matter what and one of us has to wrestle him outside just so the other person can pretend to enjoy the meal, possibly left at the table alone. I could create a ton of scenarios that people would see as disqualified but sometimes just getting in and out without a meltdown is actually being well behaved and a success.

                I am going to climb out of the classy bubble I try to stay in today and say to those who think they know what a good parent is, you are narrow minded, foolish, rude, judgmental to an unhealthy level, and your head is to deeply implanted into your backside to see it. No parent on earth has such a perfect tactic towards parenting total strangers can see how good at it they are. Yes, parents find success but they had to battle through things that didn’t work to find it in the first place. Something has to occur in the form of a struggle to find something that works and in no way is that limited to children with autism. Autism parents just tend to face not so typical struggles and have to find not so typical tactics which take time, a lot of time. We have to be able to get through the door in the first place to see what needs help and let me tell you it could be the day a new challenge sets in while we are trying like hell to figure out the ones already in place.  What works for one child might not work at all for the next and considering 1in 88 children have autism that means 1 in 88 children might require a completely different approach to simply get through a meal.

                At first I felt eating at this restaurant was out of the question but now I am beginning to think a little dose of autism might be good for this establishment. Maybe we will venture out one day to eat there but you can be sure I will be printing this blog out and leaving it on the table when we do. Maybe we will even get the well behaved child discount, but I have my doubts no matter how well my child behaves. Even though there are people in this world with their head stuffed up there backside that are also people who are willing to help pull it out, that’s if they would like some help because I would have disturb them a bit to make that happen.

               

 

"That will get better as he gets older". Not always the case.

                There is a little something people say to me that echoes in my head. When someone says “that will get better as he gets older” it can get a bit repetitive in a not so great way. Yes, some things really do get better and have like speech and interaction. Humor has definitely taken a huge step forward and last night I woke up to my son laughing hysterically for whatever reason. I fell back to sleep to sound of his laughing and even my daughter in the other room could hear it. A truly awesome sound in every way that we didn’t always hear before, so it was a great moment until I fell back to sleep.

                Typically when someone says it will get better they are referring to certain behaviors that cause stress or challenges. As an example today I asked the kids if anyone wanted to go to the grocery store with us. They did not and even though I knew taking my son alone would be hard I tried it anyway with high hopes. All seemed to be going well until he decided to wander off. I said his name but the store was crowded with people and he could not gain that small amount of focus I need him to, just to hear me speak to him. I had to leave the cart and go after him which led to a three year old on the ground quickly slipping into meltdown. He throws himself down because he is already beginning to get overwhelmed and then I touch him.  By the time I was able to pick him up his arms and legs were flailing around and the screaming began. I left that cart in the middle of the produce isle with some items in it and just flat out had to leave the store. It took all of my strength to get him in the car seat and buckled in. Once he was in he calmed down and we drove home so he could stay with his brother and sister. It didn’t go anything like I had hoped and I knew pushing it was not in our best interest.

                This is when someone will say, “That will get better as he gets older” because typically it would with a child who may not have autism. What I know is as he gets older this gets harder in every way. He is bigger, stronger, louder, and now when he is overwhelmed he won’t just allow me to carry him. He is half my size so in reality I can’t do that all the time. With every 100 trips that I take him to a store maybe ten work in our favor and with time it has gotten much harder.

                He will learn to cope at some point but for now he is a child who doesn’t even understand what happens to him. I can’t just tell him he is ok or take a deep breath when this begins. He doesn’t have the ability to listen and calm down. When he was a baby he cried and we pushed on, easy to do and could blend in because a lot of little ones cry in stores. However not a lot of 3ft tall little boys are on the ground or hitting mom while she is grabbing a bundle of bananas. We do not blend in anymore at all and to be honest I like to buy bananas in peace if at all possible. 

                A child without autism can look around and see how people are behaving and mimic that easily. A mom can explain it easily and her words may take effect. Not always easily but easier than it does with my son. Phillip can also see how people are behaving and I can talk to him but the difference is when he is overwhelmed that feeling is much stronger than anything else. He becomes much more frustrated with his surroundings than I could ever be just trying to calm him. He heard me tell him we needed to behave and I have no doubt he would like to do exactly that but the lights hit, the people walk by, the smells hit, maybe a stranger tried to talk to him, there are bright colors and shapes everywhere, and maybe even music playing. He cannot turn all of that off like a child without autism child can. Anything I say or do just fades away until he can get away or find a way to let it all sink in.

                When we first began this journey I had a veteran autism mom tell me “I will be honest with you, it will not get easier. I wish I could tell you it will, but it won’t”. I couldn’t understand how that was true at the time but now I completely understand. What she meant was, some things will get easier but some things are going to continue to challenge you in new ways as you go. I told that veteran autism mom she was the only person to say that to me and everyone else would give encouragement that it would get easier. I actually appreciated her honesty even if she was wrong because she helped prepare me for some of the challenges that in fact have become more difficult as we go.

                Her words may not ring true for every child but for us in many ways it has. I am very grateful for the things that have gotten better because I know some parents aren’t able to say that and every day I focus on the great things that come our way. I do not focus on the challenges because the next one could be right around the corner and my own mind needs to be clear so I can do whatever possible when he isn’t able to clear his, even if it is just get him out of the building because sometimes that is really all that I can do.