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.

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.

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!

  

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.

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. 

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.

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.