Thursday, December 26, 2013

Ten things that are free and could help.

   There is a few things I have adapted into life with my son over the last two years that have helped him drastically to go easy through the days. These things don't always work of course because autism is an immense force and none of these things a parent can run out and buy to create an immediate fix or change. I will tell you now there is nothing someone can purchase or an apps a parent can download that will push back autism but there are ways to challenge it in daily life that take adjusting from the way we are taught to parent.

1. EASY does it. In other words it's okay to step back from pushing to hard. Charts and progress reports I see as good information to have but the only expectation I have is some type of progress no matter how little it may seem. It's never little.

2. PATIENCE is you and your child's best friend. Not the kind of patience most of us have but as my mother puts it "supernatural ability." The way I see it, my son is a constant mimic and repeats everything he sees but autism challenges him to control himself. As long as he sees the people around him utilize extreme patience, he mimics what he sees. No, not always but I will say his patience at 4 with an autism twist is impressive.

3. STAND YOUR GROUND. I can't count how many times people have told me what I need to do for my son. Some of the advice given to me over time has been fantastic but I know when I hear advice that is flat out not a good idea because I know him. Even trained educated professionals can give very bad advice based on what they know about autism but a parent knows habits, rituals, and the personality of their own child and that has always come first for us. To many parents become defeated by this and saying no is okay to do. Easy to forget when you are buried in paperwork with a multitude of people telling you what needs to happen all at the same time. Stop and focus on what you know could help and what you know will not. Sometime what will not work creates a storm that lasts much longer than the moment you tried it. If that happens and it will, start over.

4. NEVER compare. An child with autism is different with abilities that often the parent sees when others don't. When a child without autism is standing next to your child and the difference is clear, don't dwell on it. Number one reason when everyone goes home at the end of the day every single child challenges a parent in one way or another and every single child has abilities not everyone sees.

5. FILTER your life. If you find yourself surrounded by people who refuse to accept that autism cannot be fixed, surround yourself with different people. It's easy to forget that a child who cannot communicate well or seems to be in another world is listening to every word spoken. Those words matter.

6. SLOW ADJUSTMENTS are okay. Changing a habit is extremely difficult and changing one small step in the process over time has taught my son small changes are okay. We are still working on big ones but that is where the patience comes in. An example of how small of a change is a good one would be, on a good day having my son put socks on before his pants. That might sound irrelevant but for the way his mind holds habits, it is a big deal. It's not the change in the system that matters, what matters is it was done and he felt okay doing it. The key is to not get completely stuck in the new pattern switching it back from time to time has helped him recognize it's acceptable to do. These little changes happen all the time now and before I figured this out nothing changed, ever.

7. PRAISE is underestimated. There is almost no material reward my son will work for, other than a Tictac or a cookie.  An accomplishment means the world to him as long as it's followed with words of praise, a high five, and a ton of  "you're awesome!" Yes, he might do something for a cookie but the emotional response from others is much more valuable. Not to mention if he isn't hungry for a cookie he won't budge and every child is always hungry for smiles and praise.

8. No one is PERFECT. Forget what others expect and that I don't need to explain, just do it.

9. PAUSE. Many times when I ask my son to do something I pause and I wait. I might repeat it but I don't always have to. The typical reaction to a child not listening right away is frustration and that makes sense. You say it and expect it to be heard and reacted to right away but in this house that pause makes all the difference in the world for everyone, even siblings. When we pause the reaction comes most of the time. The pause relates to 1 and 2 above and I can't say it applies to other children but it has certainly saved us from numerous potential meltdowns and if that pause can help anyone avoid that, it's is important to add to the list.

10. FAILURE IS OKAY. One thing I know from trying to learn what helps my son is I will fail repeatedly and have but each time I discovered more about him and what not do to. Once it's done that is not totally a failure because it moves us forward even if we have to go a little backwards to make it happen.

   Ten things that could improve life we don't have to buy and they won't fix everything but they might have an impact that eases things. In the end these ten things don't just apply to raising a child with autism, they apply to raising a child in general because being a parent is not easy for anyone. In fact sometimes the hardest thing about being a parent is thinking we aren't good enough at it and that is when you see number 8 above.

  

Saturday, December 14, 2013

It's easy to blame God

    I was raised in a Christian home with very strong faith in God. Every Sunday we went to church as a family and taught that God is in control of everything. His ill is the way and it's our job to trust his will which in many ways I still believe that theory but life events over the last 20 years or so have given me different ideas of the role God plays in life. If you don't believe in God in general than today's blog would be a waste of your time but give it a shot anyway because it's not a hard theory to understand.

   I used to face a hard event and grow angry with God for leading me to it. After all it's much easier to skip my own role in the process and point a finger directly at God for how my life unfolded at times. Looking back that seems a little silly to me now because my choices may have caused God himself to shake his head in frustration. Once I grasped my own actions I realized how much I ignored my role in hard times but could never ignore the strength I was given to get through them.

   Autism confused me as far as Gods will because I had no understanding of how God's will could be for a child to struggle so badly. Why would God pick on a child, was a question always in my head.  I hadn't made any bad choices and some might say the large amount of vaccines I allowed my son was a bad choice but it wasn't. It was me being a mom and wanting my son protected, judgment or blame would be ridiculous for doing what I felt was right for my child. Looking back I wouldn't have allowed it but I certainly can't say God led me to it. I can say the way the CDC has chosen to rush the process did and my faith in modern medicine signed the papers. I could have easily turned my back on the faith I was raised to have but that didn't make sense to me because the strength I was given to cope and accept the circumstances was and is something even I can't explain which I am totally comfortable blaming God for.

   I was given another dose of this when cancer took up residence in my healthy dad this year. Easily the most healthy person in our family. Not only healthy but a genuinely good person all the way through to a indescribable level. A lot of questions came from that, like how can this happen to someone so healthy and so needed in the world? Why would God do this to someone who has spent 67 years living right and just flat out treating others like they are all born as good as he is? A lot of people said to me, why him and Gods will has come up a lot. My mind has one answer to that and it's the same answer as autism, God didn't do it. Blaming God and bypassing all the things modern man produces that we know for a fact cause cancer seems a bit unfair. He didn't create the things we consume all our lives, we did. Example, I will probably start on a can of diet coke this afternoon and keep going. I know for a fact diet coke increases risk of cancer, yet I still drink it. I also know there is a trigger for autism that has not yet been discovered by science. I know my own personal opinion but it doesn't fit every story either and when that trigger is discovered I am almost positive no one will be able to point directly at God but ourselves and the choices made by mankind will most likely be very clear.
 
    I told someone earlier this year that when I pray, and I do pray, I never ask for what I want or ask why. I ask for strength to understand and get through it and that is a prayer that never goes unanswered. Along with the added bonus of finding tiny little miracles during extremely hard times that I can only blame on faith and being given the ability to see it. It can't be proven, only felt and that feeling is what tells me what is okay to blame on God and what is not. Maybe it's not about leading you to it and getting you through it but just getting you through it, that is felt and almost impossible to explain. For me the cool part about faith is it can't be explained and human nature craves proof and an explanation for everything. Consider how boring the word would be if we actually had that.

Monday, November 18, 2013

Thanksgiving...unplugged and reconnected. Could you do it?


    Thanksgiving is upon us and the joy of eating until you either fall into a food coma or roll yourself out of the house with leftovers in hand begins. For my son Thanksgiving will be a challenge simply because of a house full of people but a challenge that often makes for a great distraction in our case. Autism isn't the subject today but I have to mention it just for good measure.

   The subject is old school. By that I mean Thanksgiving the way we used to know it, tons of food, football, family, and limited technology distractions. For some, family gatherings have changed a bit with cell phones, Ipods, and whatever else we can plug into. Including the TV but considering the football lives in that giant distraction, I will leave that one alone. How many of you find yourself in a group of people and look around to find limited interaction with each other because technology has a vice grip? Texting, music, games, whatever it may be these days it's always there and to often interaction is not.

   A few weeks ago my kids and I were driving in the mini van and two of my kids had Ipods in hand with headphones in the ears while texting.  What happened was, I had no one to talk to without interrupting technology and I cracked. The new rule of leaving these things behind when we go somewhere as a family was set because at that point it was either leave it behind or this mom was going to launch it all out of the mini van window into the nearest ditch never to be seen again.

   I remember the good old days that consisted of talking and distraction by way of each other as family and as people. I know many people have set strict rules on these things but I also know many people wish they had set more rules long ago. I wish I had and did but slowly it snuck in and I allowed it. One mom fail I know I am completely guilty of and I do see it as a fail to have my children so plugged in and tuned out to often.

   We are constantly wondering what is wrong with the world around us and the way things are going in our society and we all know how disconnected from each other people have become. It's clear, we all see it and are guilty of it so this Thanksgiving, leave it all behind. If you must take a cell phone leave it in the car as soon as you see the people you are thankful for to begin with. If it's the camera you need disconnect the Wi-Fi. I know, that's a scary thought for a lot of us but think of how it used to feel to actually connect with the people sitting next to you.  Unplug the kids and give them back what this generation is missing out on, connecting face to face. Aside from the kids, could you do it? Could you make it all day without sharing a picture of your mash potatoes with 300 of your friends or only commenting on a football game with the people right next to you who might not like your comment? Could you miss a text or in some cases hundreds of them to speak to the one person next you? Sometimes I wonder if it's not just what we see in the news that is a direct reflection of what's wrong with the word but what is happening in our very own lives we don't even realize is happening, because it all slowly snuck in and took over. Happy Thanksgiving and happy disconnecting from the online world, if you can.

Wednesday, November 6, 2013

Give the gift of understanding, even if you never really do.

   Understanding is an extremely powerful force and when it's given to lives effected by autism it truly is a gift that is felt in a way that just flat out brings an ease to life. A little story today about what the meaning of understanding can do and how it's done.

   My dad has been fighting stage 3 esophageal cancer for the last 4 months. Starting as a large tumor which brought him to daily radiation treatments and weekly chemo to shrink the tumor. He needed to be able to stay healthy enough for major surgery to remove what might be left of the tumor. Eating was his biggest challenge and yet his life depended on it. Swallowing was extremely difficult along with burn from radiation, and stomach upset from chemo but he has fought hard. I have been able to be a part of this process and be there with my mom and dad when needed. His surgery has been scheduled for a very long time and it was yesterday, Nov. 5th. He was in fact healthy enough to move forward with the procedure and our entire family excited to say goodbye to cancer.

   I have known all along I would not be able to go to the Seattle to be with everyone for this process. I have thought long and hard on how I could do that with my son. I have worried daily about having to stay behind because in my heart and soul I just wanted to be there. The challenges I face with something like this are huge and no matter how hard I thought about it I knew reality was, I wasn't going to be able to be there. Of course my dad demanded I stay home, take care of his dog and check his mail. One side of that was he didn't want anyone to make a fuss over him and the other side was he knew it would be difficult for us. I dropped him and my mom off the day before surgery at the ferry terminal, gave him a hug and told him "I will see you cancer free in a week." With a huge smile on his face he agreed and off they went.

   Surgery began yesterday morning at 8am and I had almost zero concern about how things would go. My mom, my brothers, and my sisters in law, all there to see things through. Not going to lie, not being there was still very much eating at me but hoped my absence was understood. Just after 10am my brother called me and delivered news no one expected. When surgery began they discovered stage 4 cancer in the walls of my dad intestines and the initial surgery was canceled. This news completely broke me down and shocked me. It's not easy to shock me because typically nothing really does but this was something no one expected or even close to it.  My level of need to be there jumped 500% with still no way of making it work.

   An autism parent would be able to completely understand why a trip through the city and day in a hospital would be a complete disaster but I worried that only an autism parent would understand why. I spoke with my dad last night and told him I wanted to be there only for him to tell me "no, stay there and will see you when we get back." I have missed a lot of things over the past couple of years and most of the time I might get a little bummed out about it but this was one time I have lost sleep and have felt very frustrated with circumstances to say the lease. It had been tearing me up and on a entirely new level when the bad news rolled in.

    This morning I went over to my parents house to bring in the mail for them and had myself a chocolate craving. Had a friend who used to tell me chocolate was as close to a hug as you could get sometimes and I knew my dad had a small hug stash in his desk. I opened the drawer and on top of a large stack of papers was 5 little tiny bite size hugs in the form of snickers and milky way. That stack of papers under those little chocolate hugs was every single blog I posted since July of 2012. Printed out, neatly stacked and I know he has read every one of them. I sat down on the bed next to the desk and cried both tears of sadness for being here when everyone was there and grateful tears that the one person who I wanted to be near understands as well as he possibly could why I was not.

   If a person can give an autism family one thing it's not advice, diet plans, words of encouragement, cause articles, a night out, it's simply the simple act of trying to understand even if you never do. That simple act that takes only the effort of listening or asking questions makes all the difference in the world for parents and especially a child with autism. It really is the easiest thing a person can do with an extremely powerful impact.

Thursday, October 31, 2013

A Halloween Miracle!

   I believe in miracles, always have, and have lived a few in my own life. I also believe miracles come to light with the help of others. They don't just happen, they are set on a course by different people becoming an important part of life. That might sound a little crazy to some but all of the miracles I have encountered have involved all the right people colliding. In one year I have had to make some drastic decisions that changed everything and placed all the right people in our lives. Call it Gods plan, call it coincidence, call it what you will but watching it happen is nearly unexplainable and I will give it a shot.

   Halloween one year ago and every year before that was literally a nightmare. Putting a costume on my son alone was like torturing him. I would have to wrestle it on and we would leave the house with him screaming. He had almost no understanding of the process of trick or treating and honestly I wondered if he ever would. Last year we knocked on 6 doors and by that time my son was completely finished. Meltdown was coming and we had to stop with me feeling like he would possibly never get to enjoy a Halloween night for years, if ever. I cried about it and was more than frustrated with how to help him but there was nothing I could do alone to make it easier. I had done everything I knew to do at the time and I did not have any help at all, or help that made any kind of difference. I know it's a little silly to cry over a Halloween tradition but he is my child and that tradition is something children should be able to enjoy. Not knowing if your child will ever even speak the right words can be a very hard reality to embrace and a very real one.

   One year later, tonight, we left the house in a costume he loved. The first 5 houses I walked him to the door and helped him to understand how it was going to work. They had gone over this process for fun at the center this morning but I wasn't sure how the real deal would go.  Here comes the miracle, the next house I stopped in the driveway and said to him "you go ahead Phillip, do this one alone." That is exactly what he did without hesitation. He had to work at it of course, but being able to watch him from a distance walk up alone, knock on the door, say the words trick or treat, hold up his bag, and then say thank you made tears gush out of my eyes. He had a difficult time opening his bag and each person he encountered helped him out. After that one time of going alone every single house after was all his and there was a lot of them. keep in mind I already felt we had a miracle happening with the simple fact he was able to just speak the words "trick or treat" this year and in no way expected anything more. As far as I was concerned that was enough because I know how hard he has worked to just do that.

   Towards the end of our trick or treating we walked up a driveway near our home and the person sitting under a red light in a garage said "hi Phillip!" As we got closer we saw one of the ABA therapists smile and I was reminded his fight has not just been time or his own desire to work at it, it has also very much been the people who have worked to make those miracles happen, all the right people at all the right times, in all the right places helping him break down those barriers that made all of our Halloween, extremely short nights, in the past a nightmare.

   Miracles are real and without all the right things falling into place or even making hard decisions that put it all in place I don't think we would be seeing the things we have seen happening in the past year with my son and I never ever grow tired of seeing it happen. It's the fuel that keeps me believing the next one is just around the corner. Around the corner might take days, weeks, months, or years to get too but they come. For now, I am more than excited for next Halloween and every single day in between. Tears this year were not because of his struggle of feeling helpless but tears of joy from having help and seeing him overcome like a champion!

  

Wednesday, October 30, 2013

Judgement, lack of empathy, and candy

    http://www.valleynewslive.com/story/23823811/woman-handing-out-letters-not-halloween-candy
  
   The story in the link above came into my news feed this morning and no it's not in regard to autism but it is a huge look at judgment and setting a very bad example for kids trying to learn what the world is. Something all kids are doing. Here is the letter this concerned woman has decided to hand out. I assume she will open her door and do a quick 5 second assessment of children standing in front of her to decide if they need to take home a treat or a letter, they will without a doubt read before handing to a parent.

 
   This woman is concerned about the health of kids and has decided Halloween is the time to step in and send her words into the homes of parents who need her guidance. Now, she could have decided to hand out pencils or fruit snacks for the evening, in fact she could have handed out a huge number of things that don't involve candy but no, this letter is necessary to get her point across. A letter she will pass to those who she feels need it by way of a child who might struggle just a bit with self image. (Insert extreme sarcastic tone now) Sounds like a really well thought out plan to contribute to ensuring her place in the village is to get these kids on track.

   Judgment is a nasty thing and we all feel it at times in life, over and over again. When you take a child and tell them what they are, they feel it. You take a parent and tell them they aren't doing enough or they are doing it all wrong, they feel it. Everything we say to each other is felt no matter what way you spin it and we are all guilty in some way of judgment but this is an extreme no one should feel is justified. It truly blows my mind that an adult would write this letter and feel that it is OK to put in the hands of child with zero thought to how the people on the other end will feel receiving it.

   We are seeing more and more of this lack of empathy in society every single day and all we can do is try to hang onto that empathy that seems to be slipping away from people. It's to important for all of us and especially kids who are trying to manage growing up in an already confusing world. Helping people truly starts with empathy and kindness. I have no understanding of how this concept is leaving people and they don't even see it, or seem to, but this letter is the perfect example of someone who has not one clue how words on a paper might cause some harm and that is scary. The interesting part of this letter from my point of view is, my son is underweight and has an extreme sensitivity to sugar. Sugar in the form of candy makes my son sick and causes meltdowns from how it effects him so he doesn't get to eat 98% of the candy he will collect. He won't even want it and if my son knocked on this woman's door she would take a 3 second look at him and decide by appearance it is perfectly acceptable for him to have some candy.

   This letter landed this woman on the national news and it might take most people about 5 seconds to read it. For that she is going to face her own quick judgment from others and that is an entirely different topic called Karma.


Thursday, October 24, 2013

Hold the apologies please.

   That moment when you are talking to a stranger and they ask about your children. The word autism comes up and this is the moment I think in my head, don't say it just please do not say it. Then, they say it, "I am so sorry."

   That is a moment my heart just drops and I do realize people don't know how that response can come across. You see, I associate apologies with loss or wrong doing, never the state of one of my children. I have had the biggest dose of what is considered socially acceptable I have ever had in my life since my son was diagnosed with autism and yet that apology is a seriously socially awkward moment that happens way to often. It is also a moment I know how that person views a child with autism, as though I just said I had a broken child and I don't.  My son is behind his peers and he fights to cope with overwhelming situations but the last thing I would describe him as is broken or a reason for anyone to apologize to me. In fact it surprises me I can tell someone I have two teenagers in my home and a little one with autism is what serves up an apology. Anyone who has two teenagers in their house knows exactly what I mean by that in total humor of course.

   When my son was diagnosed it felt like our world came down around us but that feeling didn't last long for me. It lasted until Our Trip To Paris came to be, when that first advocate told me I might be mourning my son and having a child with autism is like thinking you have a ticket to Paris only to get off in Holland. He said "you expected to get off the plane in Paris but you look around and it's Holland. Holland is nice, but it's not Paris." That moment was the moment I realized just exactly how the world was going to view my son. Like he was not what I expected or enough and that it must be a let down for me as a parent. Absolutely not and the biggest let down in that process is that anyone would have suggested I felt that way. How could I have possibly looked at my then two year old son and feel what he was, was not enough or an unexpected let down? That was something I had no idea how to even do and I thank God my mind just doesn't work that way for myself and my son.

   I have heard a lot responses to the word autism on this journey, some fantastic and some a little strange but the only one that truly bothers me is the apology response. I imagine myself being able to grab their head like in a SyFy movie and let them see our lives unfold both good and bad over the past two years so they truly understand why an apology is really not necessary. In fact if that had superpower I could literally change lives by just grabbing people by the head for a few moments. I know they would see the world differently and slow way down to experience the details of life they might be missing. Unfortunately I don't have that ability and I only have that quick moment to respond and my response is always with a smile, taking a chance if possible to change their perspective on autism. To often that idea revolves around a violent child, an out control child, and they immediately view me as a woman who must be broken herself for having to deal with it all. I have been broken in my life a few times but not once has being an autism parent left me feeling like life is to hard. The opposite because I have a four year old life coach waking me up every morning.

   Being a parent of a child with autism has taught me more than I could have ever imagined I would learn in life as a person and as a mother. Would I prefer my son to not have to struggle? Of course and one of the biggest struggles he will face is how people view his difference. I can only hope when he hears an apology from someone he will understand that they just do not understand and it's never a  reflection on who or what he will become and that I believe will be whatever he wants. 

Sunday, October 20, 2013

A round of miracles before we call it a night!

   We have those moments that no one can possibly understand how huge they are unless they have been on this journey every day. Moments that are an amazing breakthrough for my son that to others might just seem like a child doing what a child will do. We have family visiting from Denver that Phillip has met for the first time and with that visit aunts, uncles, and cousins that live nearby have all gathered at grandma and grandpa's house for the last two days.

   A few breakthroughs have happened just in the last 48 hours with this event beginning with just being able to stay for a long time to visit, hours, and completely out of routine. A blessing because to often visits with anyone are cut short. Day one my son pushed through keeping himself occupied and relaxed for the entire visit. Day two I could see very clearly his amazing ability to cope with the change had taken a bit of a tole on him. Typical household sounds such as the dryer running caused him to cover his ears, a big clue things have kicked up a notch. We were off to visit once again only this time I worried he had used up all of his effort the day before and we would be leaving quickly.

   His patience on day two was becoming limited and after a short time clothing became to much. Soon we had a little boy in a pull up running around in full hyper speed. Refusing to eat the very food he almost never refuses, pizza. Before the clothing removal he made his way out to the van and wanted to leave but a quick thinking big brother of mine went outside and distracted him by playing with him. His uncle may not have realized it but he did in fact help in a huge way by changing the direction of my son's mind and that allowed us to stay much longer. At one point I had decided his hyper activity was a clue we needed to call it a night but his hyper activity wouldn't even allow him to be still to put his clothes back on. Again that actually bought us more time and I was just hoping he would calm down before a meltdown. Which he did with some time to let that energy out.

   Here is the moment that nearly took my breath away. All of the family was gathered in the living room and we prepared to leave, calm and fully clothed. Our family has made a habit of asking Phillip for high fives before we leave, an easy way to interact with a comfort zone but the day before he hugged a different uncle for the first time so I wondered just how far he could take that interaction. with some direction I was watching my son go all around the room hugging every single relative, eight of them, and two were very new to him. This might seem to be no big deal but when your senses force you away from people in general it is an enormous moment for him. Especially after an evening of bordering on sensory overload that was preventing him having very much self control.

   Is it love? Of course it is. Is it trust? Very much so but autism doesn't always allow him to express that. His senses take over and prevent him from being able to. There have been times even one of his siblings who he sees every single day couldn't get a hug or kiss from him because it overwhelms him. At the end of the night what everyone else might have thought was just a round of hugs, was in fact a round of miracles and a moment I will never forget. I also expect it to keep happening because once that barrier is broken down he is able to do it again and again. He took charge of something that is in fact in charge of him most of the time and when he does this, he doesn't forget how to repeat that control. It's really finding that control that is the challenge and that can take a very long time, worth every second of the wait.

Sunday, October 13, 2013

Our top ten pros of autism. What are yours?

   We often hear about the challenges of raising a child with autism and the hardships a parent faces but is there a flip side? Yes, there certainly is here. I can only write on our own experience and I will say there are pros and cons to my sons difference. Autism cons are most often seen in public when a meltdown hits or my son kicks into top speed from so much to explore and the pros often aren't seen  or really even spoken about enough. Today I am listing some of those pros and believe it or not you might see how autism has at times made parenting a bit easier than most would expect.

1. Bedtime. There is never a night he disagrees with going to bed. That's right! A child with autism who will in fact stop everything, turn everything off, and march right up to bed when I say it's time. He climbs into bed rolls over and in a short amount of time falls asleep. Autism does sleep here, as long as we go about it the same way every night.

2. He is never messy. My son does not like to make a mess and prefers an order to things. If he finds a toy in a toy box, you can bet it will not go far from that toy box.

3. Doesn't fuss over leaving things at home. If we are leaving the house all I have to do is tell him the toy stays home and he then puts it down because after all, mom just said that is where it belongs and there is logic in that. He does it and at 3 years old does not ask why or try to change my mind. Of course he doesn't have that communication yet but even a child with limited speech can get that point across if they want to.

4. Almost never cries for a toy in a store. My son has never wanted to leave a store with a toy in hand. I say almost because if he isn't allowed to inspect a toy he is interested in he then might get upset but never does he want to actually take it home. If he finds it in a store then the store must be it's proper place. I once fought with him at two years old to walk out of a toy store with a toy plane I bought for him. He did not want to leave without putting it back on the shelf. I ended up putting it in my pocket and giving it to him later on that day, at home.

5. His eating habits are limited. He never requests junk foods and this makes for an easy grocery list.

6. He needs routine. Routine can make for easy transitions if it is a daily habit such as getting ready to go the autism center. I say it, he knows exactly what to do and does it. If he knows what to expect than I know what to expect and it flows fairly easy.

7. Getting out of the bath. All I have to do is turn on music from How to Train Your Dragon and that is part of his routine that tells him it's time to get out. No fuss, no questioning just hit play on the Ipad and he climbs out.

8. Verbal praise. My son thrives on verbal praise and interaction, he just loves it. If he does a great job simply saying it or dancing means the world to him. Material rewards are totally irrelevant to him. He does not see the value in material reward at all, it's just stuff.

9. Kindness. He is naturally kind to everyone. Kids his age very often push each other and are testing the world around them, trying to figure it all out. I see parents all the time having to stop a child and tell them to be nice. I have never had to do this and most of the time I have to interfere because he does not know how to react and will be run right over.

10. Work ethic. Yes, a three year old can have a work ethic that seems to be just part of who he is. He has only cried one time leaving him at the center in 6 months 5 days a week and it was when we first began. He now approaches his session like it is his job and it's time to work, on most days marching right in ready to begin with or without the therapist for the day.

    There you have it, ten pros to raising an child with autism and really if I sat here long enough I could come up with much more. I have often asked myself if these things are related to autism or are they just him and at this point I can answer that by saying it's both. All of these things I could probably turn and point out the cons of each but that's not what the mesg of this blog is about. It's very easy to get absorbed by the challenges and overlook little elements that really are at times outweighing those challenges, but for us the pros are there. When I discuss autism with people they ask about the difficulties because that is what they know autism to be, difficult. They aren't wrong but they are also not always aware there are some very strong positives along the way.

Monday, October 7, 2013

The shoelace saga comes to an end

     How small can a detail be to throw off my son? Very small and sometimes I tell myself he will grow used to a change only to be proven wrong.

     Around a month ago I set out find new shoes for my son and just picking out shoes can be a challenge. For one, I can't take him with me because he will not stand still in a department store. For two I have to inspect the shoes for anything that might cause him discomfort and that could be a shoe being to heavy, made of out of something that doesn't bend well, where will hit on his ankle, and of course because he is not with me will it even fit. When I set out to find him some shoes I had an idea of what I needed, the size, and knew a short flexible canvas that hit just below the ankle would be the best.

      The day I searched every slip or Velcro shoe I found was not the right size and decided to get him some lace up shoes. With the thought having him sit every day to lace them up would actually be good for his patience and a helpful way to get him to sit still for a just a moment. In my mind I thought I had it all figured out and the lace ups would create a positive situation. Found the perfect shoes and he loved them. They fit perfectly and he sits still every day to lace up those shoes. Total success and smile on my face for a job well done, sort of.

      The shoes a month later and daily protest are going to have to be replaced. The shoelaces are causing a daily irritation for him and the only reason the shoelaces are a problem is because they do not fall on his shoes in the proper place, wherever that may be. The first couple of weeks he stopped walking a lot to bend over and try to place the shoelaces where he wanted them to stay. Every day I had hoped he would ignore them but every day they irritated him more. When he could not get to stay in place he began walking on his heels with the idea they would fall back into place. So, after weeks we had a boy walking on his heels and stopping every few feet to adjust the laces. The only thing that keeps him moving in these shoes is to tuck the laces under the bottom of his pant leg so he cannot see them which doesn't last long. Now leading to mom stopping to tuck them under, to Phillip stopping to place them properly, to walking on our heals, to flat out taking them off.

    When I picked him up from the autism center today his therapist told me the shoes had to go for his session and that was when I knew the shoes had to go in general. The smallest detail that I thought he might just get used to eventually started to become a bigger challenge than I ever thought it could have been. You and I fully understand shoelaces move and that is OK but the autism can't stand it when the shoelaces move and the autism also causes him to focus on the annoyance.

     New shoes it will be and this time I can add one more important detail to my shoe shopping adventures which will be no more shoelaces. Once we resolve this problem he will stop walking on his heels and our constant stopping to adjust will come to end, although I can't say the stopping is a bad thing because he is difficult to keep up with at full speed but full speed is much better than knowing one small detail will not let his mind go other places. Most of the time autism keeps him in constant motion but the combination of  a couple of strings and autism slowed him way down this time.

     

     

Thursday, October 3, 2013

If you don't push him, you will be holding him back.

     Preschool conversation came up today between autism moms at the center. Some kids are in preschool now, others have attempted it and backing off until they are more prepared, and some like my son have not gone yet at all. Not all preschools are autism ready and just finding one that will suit your child and understand the needs is a scary thing for many parent's, all parent's really but a little different when autism is involved. We cannot just pick a preschool and run with it, we cannot always meet the required schedule in place as often times it could be to much and price for preschool if it's one that needs to be paid for is not cheap.

    We have fears for our kids when this process begins even if we know we are sending our child to a great place, the fear is always there. We all seemed to have one thing very much in common during our quick conversation and that was "what if I push for to much to fast." That statement is a very real concern and it's easy to explain.

    It has nothing to do with coddling or being afraid to put our children out into the world like most people might think. I can't count how many times in the past two years people have said to me, "if you don't do it, you will be holding him back." Whatever the event may be that has been said repeatedly to me and eventually I just began to pretend I didn't hear it. Reason being, raising a child with autism is so very different that a theory like that doesn't seem to apply like most people tend to believe. After all we see it in articles and on the media all the time. Early intervention and yes that is very important but many people perceive early intervention as get that child out there and get that autism under control. Harsh way to put it but I have had conversations with people who have that idea planted into there minds when it comes to autism.

    Here is an easy explanation as to why I am OK with not pushing my child in all directions as soon as I am told to. Pushing is good, pushing to a point that has become to much will in fact set my son back. Being to overwhelmed can put him a stand still with is progress or even send him into regression if it has really been to much. Three hours is what he attends at the autism center and most of that three hours is work disguised as fun, a perfect approach by the way, but at the end of three hours he climbs into the mini van completely exhausted. I cannot have the stereo on and sometimes even speaking to him is to much. He goes into power down mode and I let him do just that. The bottom line when someone says to me "If you don't do it, you will be holding him back" the thought in the back of my mind is always but If I do it before he is ready I will send him back, and he has come way to far in a short time. I have to chose very carefully what is right and when, many times not having a clue as another mom said this morning. We find out once it begins but I think we all know putting the breaks on when needed is not "holding" our children back. More like "holding" the progress we have seen them make and that progress is way to precious to afford loosing based on what we are simply told to do.

   Sometimes an autism parent will take a step back to simply keep things moving forward.

Tuesday, September 24, 2013

Quiet Approach and Consistency Breaks Down the Barriers.

   Over the past two years I have paid very close attention to who my son bonds with and why. When everyone can seem overwhelming for one reason or another, I can only imagine what people might look like to him at times. Especially when he is already very little and everything must seem large and loud to him. I have watched him react to typical things people do around children and most of the time his reaction is not what people expect simply because he doesn't view everything the same way we do.

   An adult might walk into a room and in a loud enthusiastic tone standing tall, say hello to him. He then turns and puts distance between himself and that person. We might be in public and someone will speak to him randomly but he has never seen them before and that first introduction to people is a lot for him to take in. How they look to him, how they smell and yes he will react to a smell even if he isn't close, how they sound, and most of all how they approach him. That first ten seconds if interaction is much more to him than most people realize.

   When I realized this it was our first visit from an advocate in October of 2011 and it was the first time I saw him react to a stranger in an extremely positive way since autism came to be. The reason was she walked into the house quietly, she kept her voice low, and even though I had a living room full of furniture she chose to sit on the floor. My son came out of his room and approached her right away without any hint of being intimidated by her. At the end of our visit he was playing with her jewelry and was trying to make eye contact with her. Sometimes he will get right at eye level and tilt his head back to focus on another persons eyes but up until then I had never witnessed him doing this with anyone but our family he sees every day. The reason was simple, she created a comfort zone for him and when it happened I was reminded of how many people he had encountered that were just to much in that first ten seconds. Once I understood this I knew what to expect when he was around people because of how they approached him. I personally even made some adjustments at home to turn life down when he needed it.

   Many times this has been mistaken for my son not liking someone or not bonding with someone because they could not understand but at the same time consistency is a big pay off in his life. Even if someone overwhelms him at first the consistency of the person allows him to overcome that. He can get past all of the things that turn him away if he is constantly exposed to it and it breaks down that barrier for him. My teenager daughter has a friend who comes to our home nearly every day. I stress teenagers because teenagers are not quiet, they are the opposite as we all know. Recently my son has started to hug this friend without warning because he likes her and she is a consistent person in our home no matter how loud it gets and these hugs took months to happen.

   The way he chooses to acknowledge and show affection to people doesn't just happen right away. If we are spending a day with people he knows but has not consistently been around he might even come across as now being aware they are even there. He is aware and he knows them but the barrier is still there if they are not people who are in his life every day. This is also why when a new therapist works with him at the center it takes time for him to adjust to that person. It's why he is most comfortable with his siblings, therapists,  and is just now beginning to allow hugs from grandma and grandpa who are now consistent instead of a couple visits a year when we lived far away.

   Looking back to when we lived in Montana and I would tell my son grandma and grandpa were coming for visit, there was never a reaction from him like you would expect from a 3 year old about to see his far away grandparents. Even when they walked in the door he would often hide for bit but when the visits became closer together with a quiet approach he began to express himself. Now we leave the autism center and every single day consistently he asks to go see grandma and grandpa, although he doesn't always acknowledge them when we get there he will allow hugs and kisses and that is enormous progress.

Sunday, September 22, 2013

Be Grateful

   As an autism parent I constantly see people with children around me who take things for granted. I notice not because I see them as ungrateful but because at times I wonder if they are grateful. They often seem unaware of what it might be like to have to adjust in ways only an autism parent would understand. They aren't ungrateful because of course they love their children, they just at times seem oblivious to how different it could really be. Here is a list of the things I have noticed along this journey that I have often wanted to tell someone just how grateful they might want to be.

1. Having a conversation with their child.
I was once standing in line at a Ross and a very chatty 4 year old was in line with mom ahead of me. He had so much to say and mom quickly told him to stop talking. If a child can be chatty and express what is going on in their mind, be grateful.

2. Sitting in a cart at the grocery store while a parent reads labels.
I almost always see this scenario and this is one I have never experienced with my son. If a child is able to even stay anxiety free and calm in a grocery store, be grateful.

3. Parents talking about a child's favorite foods.
Typically parents will talk about a variety of foods their child likes or dislikes. If a child has accepted a variety of foods to begin with, be grateful.

4. Taking a child to see the latest Disney movie or family event in general.
If a child can process the world without extreme anxiety,be grateful.

5. Getting a babysitter.
If you are able to leave your child with others to maintain a social life of your own, for the love of God be grateful.

6. A child talking back to a parent and getting themselves a time out.
If a child has the ability to express that stubborn streak with words, of course address it but be grateful.

7. Potty training and how quickly a child is catching on.
If a child has the ability to sit long enough to master this life skill quickly, be grateful.

8. A child having a friend over to play.
Be grateful.

9. A child dressed themselves that day and their clothes don't match.
If a child can put their own clothes on without help, be grateful.

10. A child being enrolled in mainstream sports or typical programs such as swimming lessons early on.
Not an option for some to incorporate right away, be grateful.

11. Getting a child's attention simply by saying their name one time.
I often have to get in front of my son and create a disruption as to what he is focused on. Saying his name one time happens but not often, be grateful.

12. Knowing what a child's favorite book is.
Some children struggle to sit through an entire book let alone are able to say which is a favorite, be grateful.

13. Singing songs together in the car to a child's new favorite song over and over.
I have listened to parents complain about this and roll their eyes about the song of choice. Some parents would give the world to sing a really bad song on repeat with their child, be grateful.

14. A child using a fork or spoon to eat.
Be grateful

15. Temper tantrum at home for not getting what they want.
Many parents just want to be able to leave home without their child falling apart and can't even express what they want, be grateful.

   None of these differences make a parent ungrateful and all of these things go unnoticed as a blessing to most people. It's life as they know it just as autism is life as we know it but at the same time as I have sat and listened to these things come up, I stay very quiet. I can reflect back to when my teenagers where little but I cannot relate when it comes to my child with autism. It's just not the same parenting world, it truly changes how a parent views the world around them. Many times I wish I could introduce that way of thinking to others without autism forcing it to happen. Be grateful and aware of the blessings around you, large or small, because some are experiencing life a very different way.
  

Tuesday, September 17, 2013

Forget the Autism Stigma

   Every morning I sit down with my coffee and log into my computer to look up the latest autism news. I read the latest information and some inspiring stories but something happens almost each and every time that makes my brain shut down. Not only shut down but I  want to sit down with the writer and beg them to stop forcing people to create an idea of autism that so many kids and adults do not fit into.

   The information might be interesting and the story a nice read but then we hit the part the writer decides to describe autism, just in case someone lives in a cave totally cut off from the outside world and hasn't heard of it yet, they quickly jump to the autism stigma that is so frustrating for some. They explain autism as a disability that is on the rise and that's fact but then they jump to the autism description that is consistently pushed into the minds of everyone. Autism struggles with empathy, expressing feelings, acts out in meltdowns sometimes violent, struggles with social cues and we all know the rest. We are constantly fed stories about autism in the media and many of the stories that grab the attention of the media are just not what many of us experience in our homes.

   My son has autism. He has never acted out violently or even led anyone to believe he would. He has never bitten me or thrown anything in a fit of rage. He cares very much about how the people around him feel to an impressive level. Not an impressive level for being autistic, an impressive level as a human being.  He has a great sense of humor even with limited communication and that's a hard thing to get across when you can't speak. He expresses his feeling just like all of us do because he feels just like all of us do. When he walks into a room he isn't aware he struggles socially, not yet anyway, but the people in the room have been taught to believe he will. They see him as socially challenged but he does not. The way autism is described creates the idea he isn't what he is expected to be by society, which in turn creates the challenge. People hold that stigma and expect it after all it's what they have been taught to expect from autism.

   I always find a ton of irony on articles that will state no two cases are alike and then jump to a list of autism traits. I often wonder how can we push such a direct list of traits on society when not every autistic fits. Or are just flat out completely misunderstood. Not every parent is struggling so much with autism they are suicidal or contemplating murder to escape the autism challenges but we see it in the media way to often. Yes, autism is hard and it's more work than a parent expects. It's draining and just keeping up mentally and physically is by far one of the biggest challenges I have ever faced in this life. It's a daily effort that has to be handled with love and patience but my child is not a robot. He is not lost in an alter universe and he is not what many of these articles describe him to be. I also know I am not the only parent who feels this way. Many parents and autistic adults will read the description of autism and sink a bit, because it causes more harm than good in society. Getting to know someone with autism is the best way to know what autism brings to that individual and each will in fact be very different.

   Forget what you read about what autism is supposed to be like. Forget the stigma pushed upon us all daily. Forget the label of being socially lacking compared to the rest of us. The only way a child with autism feels socially challenged is by being treated differently. If an article says no two are alike than treat people with autism exactly that way, just like the rest of the people in the world. Like every single one of us on earth. All different and something to offer everyone in some way if we allow it to happen.

Sunday, September 15, 2013

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.

  

Saturday, August 31, 2013

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.

Tuesday, August 20, 2013

A closer look at One Pissed Off Mother

   Here it is if you haven't seen it yet, the famous letter a not so friendly neighbor wrote to a grandma who cares for her autistic grandson. I have thought a lot about this letter since it hit the online world and I think we need to get inside the mind of One Pissed Off Mother and take a really close look at what's truly ailing her.
   
   Number one her greeting, "to the lady who lives at this address" she has not one clue who she is writing to, not one. Or if she does she doesn't know a first name therefor she knows nothing about how this person feels day in and day out. The greeting alone makes everything else she states meaningless. One pissed off mother has the time to get mad, throw some purple paper in the printer, and write a stranger a letter about her feelings. Clearly her feelings are top priority over "lady who lives at this address" and time is something she can waste. A privilege most people don't have or chose not to.

   We move on to her noise complaint. I think she may have some sensory issues of her own because she seems to be much more affected by it than she should be. Might be a good idea for her to address her super hearing that cannot seem to turn down the world around her. Suburbia is not quiet or even close to it and for her own personal peace, she might want to consider a move to the country herself. A park to take the boy to and let him make noise is her recommendation so not to kick her sensory difference into high gear. A wonderful idea....if he was a dog. He is a boy who can't control his body but I bet he has more control in his mind than one pissed off mother does. Physically he struggles while her struggles seem mental. I think some fresh air and daily trips to the park would do her some good to regroup  and protect the neighbors from her lack of self control.

   The special needs parent comment, she seems to feel angry with people who she feels might be getting an extra dose of help, perhaps this is a cry for help of her own. Her desire to have a special needs parent cater to her overwhelmed and intolerant state of being is clearly a show that her silent children are very hard for her and she needs others to adjust. I think a special needs parent might be exactly the type of friend she needs to overcome this state of mind and to learn the world doesn't adjust for you no matter how badly you desire it.

  Last but not least her suggestion to euthanize this young man might suggest she is a distant relative of Hitler and on top off all of her other struggles, sensory issues, to much time on her hands, lack of peace and serenity, in need of extra help in the parenting department, extreme focus on her own feelings, a communication handicap, and a anger management course or two,  I think she might be a Nazi.

  This letter seems to a cry for help but don't worry One Pissed Off Mother they are coming for you! Some advice from a special needs parent who chose to live in suburbia with my autistic son, it's going to get worse before it gets better but good people will reach out to you and help you if you ask. I think we all now know someone who could have helped you work through your intolerant state of mind. "The lady who lives at this address" has learned to tolerate and find peace in ways you might never understand. This ignorant purple mess of a letter is one irrelevant dose of just how much intolerance she deals with and the strength she has shown is to be commended and that goes way beyond words on a paper from the neighborhood Nazi.

  

Saturday, August 17, 2013

18 things I wish they would have told me!

   Getting an autism diagnosis is an emotional process and for someone who knows little about autism it can be scary. You go from being the person who knows your child better than anyone to the person who is being told in every direction what you need to do for your child no matter what you know. I remember feeling at the time like an autism diagnosis meant they all knew him better than me, and that was just simply not true. I had filled out endless paperwork, watched his skills be put to the test, listened to strangers tell me his faults and how much he lacked to keep up with kids his age. I had strangers coming into my home telling me what to do with my own child based on his difference and yes they were there to help but I think back to that time and there are some things I wish someone would have said to me. Things not taught to specialists or part of a autism training program for advocates. So today I am going to list the things I wish I would have been told during the process because they truly have affected life since and it matters to someone going through the diagnosis process.

1. It's not the end of the world! It is however the end of the world you knew and you have already been introduced to it. Now you have been given a label for it and that comes with instructions. Even then, the instructions won't always work so don't get frustrated when it doesn't apply to your child. Do what works and it might take time to figure that out.

2. If you think you are a patient person, you are going to need to learn a level of patience you had no idea you were capable of. It is about to become a superpower and it's necessary.

3. People might blame you, people you never thought would and your about to learn who is strong enough and who is not and the clarity might shock you.

4. Not everything is a side effect of autism. Pay attention some things will seem to intensify autism but many doctors will treat you as though autism caused it. Research is about to become your late night hobby for a while. Gut flora, look it up because a probiotic is going to bring your child a ton of relief.

5. Your never going to find a cause, at least not one particular one and no matter what you think caused it in your child's life it will be different for everyone. Respect that and carry on.

6. You are going to learn more about food than you ever thought you would and your also going to throw a lot of it away. Your entire perspective on food is going to change because much of the food you have been eating most of your life is toxic. Get ready, your going to fear food for a while until you learn what's good and what's not. On the other hand you might give your child cake for dinner if that's all that will be accepted that day.

7. Your social life....don't get your hopes up. It was limited before and since some people will shy away from an autism diagnosis and stop helping you, it might get even more limited for a while.

8. Eventually you meet an a lot of people who understand and offer you enormous support. 99% of those people will live in your computer. It will be the one time in your life you are eternally grateful the internet was invented.

9. If your child reacts badly to a therapy or therapist immediately, follow your instinct and not the demands of the people who want your insurance card before your opinion or input.

10. Listen to yourself talk. Your child hears everything you say and understands it. Treat your child exactly that way even if it just doesn't seem that way most days. Look up Carly Fleischmann and she will show you this.

11. Your child might not be an all star baseball player or be the quarterback on his high school football team. Dad thinks about this more than you and moms and dads have different concerns. It might seem silly but every concern matters and needs to run it's course with understanding.

12. Potty training....see number 2 (on the this list) it's not going to happen in a toilet as easy as you would like it to. You can try to force it but I wouldn't recommend that or it may take even longer.

13. Your child is going to surprise you over and over again. Be ready for those moments you were told might not happen because they might. Expect it over time even if it's the smallest moment to another, it will not feel small to you!

14. No one knew your child as well as you before the autism diagnosis and after the diagnosis that does not change. In fact you might notice just how aware you are and your child will cling to you as though you are what eases the world. It's OK to step away when you are given the chance because you are important! You will forget that from time to time.

15. Not every behavior is autism related. Lately when my child goes outside to play he rushes to the kitchen to grab a cucumber. He will not go outside without one beginning 4 days ago. Is he displaying odd behavior? Yes, and it may just be he is preparing to battle pirates and a cucumber is his weapon of choice. He is a child before he is autism.

16. Do not compare your life with anyone else's. That parent at the grocery store with a child who is totally compliant and sitting perfectly in a cart? There is more to that parents life than that moment. They have thier moments and you have yours, remember that.

17. Purchase comfortable shoes. Your going to be moving a lot. Your feet and your mind are not going to get very much rest!

18. I was trying to get to 20 with this but 18 will have to end it. So, last but not least keep this in mind every day when it gets hard. No parent has ever given birth, held a new life in their arms and said "This is going to be so easy. I know exactly what to expect and it's all going to go my way!"


Thursday, August 15, 2013

The Process of Life

  The last few months have been a challenge and not in regard to autism. I can actually say autism and my sons difference has been the very least of the challenges that have been knockin me around a bit. Life challenges because it seems even if you live an extremely isolated and anti social life you can't avoid it. It is just part of the life ride and it goes up and comes back down, the good part is eventually it goes back up again. I stepped back from raising awareness and couldn't seem to find an ounce a desire to blog. Basically I was drained and trying like to hell to figure it all out.

   A few months ago I made the decision to end my relationship with my sons father and it was a decision I hated to make. Somewhat forced to do for my own sense of self worth and sanity and even then found myself wondering if I had made a mistake a time or two. Even when you know what you have to do it's easy to question it. It's a change and big changes are hard to make. Unfortunately that decision also led to my son not having his father in his life at all. Not fair for my son but people do as they please in this world and my idea of a dad has an extremely high standard attached to it, which brings me to the next life challenge.

   Recently my own dad was struggling to swallow his food. Started as an annoyance for him and then that annoyance became a bit concerning. Quickly diagnosed with stage 3 esophageal cancer. A shocking blow for our entire family for a couple of reason. My dad is an extremely healthy man who just a few weeks ago participated in The Courage Classic charity bike ride in Colorado. An event he does every year with my uncle, 130 miles in 3 days through the mountains and they both finished the ride together. My dad does not fit into the risk factors for this cancer other than being a male over 60. Our family has also been very lucky over time avoiding any situation that truly leaves all of us a bit shaken and confused. Our family as a whole has been extremely blessed and even through this difficult time I will say we are still blessed. Odd to say after a cancer diagnosis but I don't see any way any of us, especially my mom and dad, will go through this event without complete support and love. That is blessed and his great health is also a huge blessing to fight the battle that is about to begin.

  I think often we get so comfortable in life, ok not me, but it is easy to just wake up in the morning and feel complete security that the day is going to be just another day. I have experienced some things in life, autism being one, that consistently remind me none of us are in control. Or at least as in control as we think we are and would like to be. Things in life are going to happen. We won't see it coming, it can rattle your cage, confuse you, leave you feeling helpless, and sometimes it just flat out won't make sense. I know with autism I have beatin the crap out of my brain trying to figure out why my little boy was changed, why did God let my son face autism. Why did God let cancer attack my dad and really my whole family. Along with a few other things in life I have asked God why in a very unpleasant tone and some very bad words. I am human he understands and I have also gotten very pissed off a few times over circumstances that haven't made sense. I have also learned over time when I have gotten angry at God and asked why, the answer typically comes. Eventually you find out why and you are supposed to use the answer in your own life in some way that impacts another life.

  Some of you may role your eyes at that thought or the thought of God in general and that's fine, I don't judge anyone for that and would expect the same respect. I only know what I have learned and everything out of my control that I have asked why has played a role in one way or another. Good or bad the why always gets answered. I don't know for sure how autism is going to affect my sons life and I don't know for sure how cancer will affect my dads but I know the answers will come and life is a process. A process we don't always understand and we just have know we are all going to be ok, making large or small impacts on each other. You don't have to believe in God like I do to know this is how life works. All of us are walking around in a state of confusion at times looking for answers to why. The answers come almost always, now go live your day! You don't have to move mountains, just impact someone else and keep in mind you might not even be aware when it happens. We accidently impact each other all the time, it's the process of life.

Monday, August 12, 2013

Don't You Smile!

   If you are a new reader I have three children. My youngest, who is 3,  is my son with autism and my two older kids are 13 and almost 15. When my older kids were little we played a game regularly and it went something like this, if one of them was upset I would demand they not smile. Loose a toy, bad day, tired, whatever the case was I would just sternly say "don't you dare smile!" I might have had to say this a few times but eventually they would break and that smile would grab them. It was actually one of my favorite things to do with them because children cannot resist the smile no matter how bad the day is. The fight to not smile would always end up being to much and they would loose the battle. A pretty common game to play with your kids and typically ends very well no matter what the situation may be.

  So many times with my youngest I have wanted to play this game and I can tell you I have tried multiple times. Only to have it end with me feeling foolish because he in fact is not going to smile. Or I have wondered if he has even understood what I was trying to do. I would say it with enthusiasm and get a blank look and then maybe try again the next day. Eventually I began to wonder if he would ever be able to understand that game at all, after all I was telling him NOT to smile. Would he ever understand the that my intention was to create a smile or would it always be a blank look? Did he possibly think I really didn't want him to smile, or was autism just not allowing him to understand the game?

   Recently I got my answer to that and a very large dose of hope and joy for him. Just a few days ago we were in the van and he was very serious as usual. I glanced at him in the rear view mirror and could see a stern look on his face so once again I said it "don't you smile Phillip" expecting the very same reaction I had received over and over again for over a year. That is when I saw his cheek move and his eyes shift toward me. So, of course I said it again with even more enthusiasm because I saw a possibility of a reaction and to my surprise a giant smile took over his face! A dangerous moment to be driving by the way because I did not want to miss one second of his reaction. I had waited way to long for it and never expected it to come any time soon. Just asking him to smile has been a challenge we have never overcome, until now. He has not purposely smiled for pictures or on command since autism. Before autism he was full of smiles but after autism something had to be funny and if it wasn't funny a smile would not just come to him. Most people can smile when told or at each other out of friendliness. We smile all the time even of there is not major motivation attached or at least we try to but he has not been able to do this.

  We have continued to play this game and not only does he react just as he did that day but he now tells me "don't you smile" when I am not smiling. I wish I could ask him if he knew all along what I was doing and if the world was just to busy to understand. I wish I could ask him what changed that day to create the smile I told him not to put on his face and what gave him the ability to open up his mind and let it out. I can't and really it doesn't matter because once something happens you don't think ever will the overwhelming feeling of happiness for him is amazing. To see that little cheek move just a little that day was him telling autism, you don't have me. When he is older he can tell all about what it's like for him to have autism but for now we have new way to turn a frustrating situation into a smile. A huge win for him and he sure loves trying not to smile=D.

Friday, August 9, 2013

I rarely go back, before autism and this is why.

   There has been a lot of articles circulating lately on the autism vaccine debate. There always is but it seems to gaining a bit more attention and questioning for now, that is until someone puts out an article to blast it to pieces because that is what typically happens. In the past year and half I have communicated with numerous families with numerous opinions on how autism came to be for them. The people that pull at my heart the most are the ones who are completely convinced there child changed after being vaccinated. Why? because they aren't wrong but society tends to shake a finger at them for saying so. It's common knowledge in the medical field a vaccine can collide with a difference in the body and not work it's way through as expected but the problem is the research is not being done and that is just flat out sad. Not research on the vaccines but research on what is going on in so many little bodies that isn't allowing the vaccines to do there job. Actually the vaccine probably is doing what it's intended for, leaving behind collateral damage and it's OK to ask why.

   The other day I put in a DVD  I made before my son changed and this might sound weird but I almost never look at pictures of my son before it happened. How can a mother avoid pictures of her child during some of the most amazing days of his life? It's hard, very hard to see a different little boy. The pictures tell a story and as a parent it literally hurts to see that story unfold. Starting off as a healthy chubby little boy and smiling all the time. Different foods all over his face smiling and laughing through it, proud of his messy face. Wearing different little outfits I picked out and dressing him up without any problems on type of clothes. All the different people in the pictures holding him and smiles on all the faces. Life was pretty typical of a family with a new baby.

  Then the pictures start to change and the changes come directly after they day he received a heavy dose of vaccines. The smiles turn into a blank look and the idea of having his picture taken is gone to him. Food on the face completely stops for two reasons, he won't eat and he definitely will not cover himself with food as a toddler does. No more cute pajamas or outfits because clothes become a problem and it's all diaper of pull up pictures. His personality becomes hard to find in pictures and the people in the pictures are gone. It turns into him almost always alone in the pictures with me trying desperately to get a smile or just to look at me when I take it. No one can hold him anymore to pose and if they do he is clearly fighting the grasp.

   Everything changes right after a certain event in his life, our lives, and that is extremely hard to watch. Even harder to know I am not the only parent who might avoid before autism pictures because they feel the same way. When an article comes out blasting the theory that vaccines can trigger autism I think of every parent and child who avoids the before autism pictures because they just know what happened. These articles we see make us sound like we are delusional and paranoid and the people who haven't lived it roll there eyes at any opinion that states collateral damage. Ignored and shoved aside with some kind of thought we just don't accept our own genetics. I think many parents who have gone through this would gladly take a genetic difference theory any day over collateral damage. I know for myself personally that would truly make it easier but I also know that is not what gave us life with autism.

   No matter how many risk factors are thrown at me or theories people spew at me I avoid pictures of my son pre August of 2011 because that life is gone. Born in 2009 and transformed in 2011 on the day they told me it was best to do the shots all in one day then to bring him back for more pokes a week or two later. I don't blame them but I do blame science and the lack of research being done on cases like my son and so many others. It can be done and it's avoided for one reason or another which is not OK for those parents who are shot down for what they know happened right before there eyes. These parents are not in denial and they are not paranoid but they are extremely strong for understanding and pushing forward knowing the research is avoided for a reason. Lack of research tells us, we have a problem.

    For now I throw in an old DVD on occasion and when August of 2011 starts to show, I quietly say "there is goes and has fought like hell ever since." I am also reminded that we tread lightly in regard to any future vaccine talk or even antibiotics because his body doesn't accept it and until I know why, I have to chose very carefully what could possibly cause more harm to him. In fact it's a little odd to me after autism came along clearly after the vaccines and an additional allergy to the only antibiotic he has ever had no doctor has ever mentioned his little body might have a hidden difference that prevents these things from being tolerated. Doctors need symptoms to investigate a health issue and it's my thought in our case anyway, autism is the symptom and the immune system is the health issue. Instead what we get is a autism is the health issue with symptoms no one understands.

Sunday, July 28, 2013

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.

Thursday, July 18, 2013

Even Jesus was a Toddler

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

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

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

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

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

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

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