I am not a good advocate, I used to be but not anymore. I have a numerous reasons why and it starts with the simple fact I am an not an exhausted autism parent. In fact the only reason I am ever exhausted is choosing not to go to bed at a decent hour some nights. Plus I have three children I have to adjust my mind for and each I have to parent a different way but autism plays a small role in that.
I am not a member of any online groups with a negative title such as Autism Sucks or Exhausted Autism Parents because the title of some of those groups turns me away before I could ever participate in them. I am not trying special diets, anymore, or concerned about food allergies although if my son would eat a bigger variety of food other than pizza, peanut butter, and cookies, who knows I might discover some. I am not concerned about where he falls into the social order as long as we see some form of progress and even the smallest win is good enough for me. I am not concerned about what people think he should be doing because what people think is irrelevant.
I don't engage in cause debates anymore because I know what the cause was in our lives and I don't need to debate it. I am not pro-vaccine or anti-vaccine because picking a side is impossible when you weigh all the arguments. I don't tell people my son is autistic unless they ask because it shouldn't matter and it never does until I say it. I am not bothered when people stare at him because people tend to stare at things they are trying to figure out and I don't take it personally. I smile and go about the day knowing they have zero impact on tomorrow and knowing 95% of the time they aren't trying to offend me or my son.
I have no complaints or concerns about my son's behavior and the reality is he impresses me daily with his sense of humor, kindness, and never stop trying way of doing things. He can speak a little and I was told without 40 hours of therapy a week that wouldn't happen, but it did and a little is a whole lot better than not at all. He is 4 and not potty trained but I consider all of the amazing things he has accomplished and I know he will accomplish that as well with time. If it doesn't bother me to wait until he is ready than it shouldn't bother anyone else. He is not violent to others or himself and I have never seen a hint of that ever being an issue and he is extremely sensitive to how others feel both emotionally and physically.
There are two things that actually do still bother me when the topic of autism comes up and the first is when someone assumes he isn't paying attention. Treating him the way the autism stigma has taught them to. By that I mean they might think he can't emotionally connect with them or they are afraid to try because they have been taught by the definition of autism he could meltdown or he might be to disconnected to try. To Distracted? Yes, that is a fair assumption but disconnected, absolutely not. The second is when someone says to me "Kids with autism grow up to live "normal" lives all the time." Always said to be encouraging and it is a positive statement, depending on if a "normal" life is the goal. I don't know what a normal life is because I personally have never had one or know anyone who has. I suppose it would be living independently and finding a 9 to 5 job like the rest of the us but when I picture my son as an adult a normal life isn't the first thing that comes to mind that I want for him. Happy is the first thought I have no matter what kind of life takes him to it.
Thursday, February 6, 2014
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.
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.
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.
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!
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.
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.
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