Monday, December 29, 2014

Is There Or Isn't There?

   There is something else that I am working on, but something happened today that I feel really needs to be said. So, please bare with me. I realize that every one of you have your own belief of God and miracles. I also realize that it is a spectrum, (do you see what I did there), of belief from atheist to Baptist. I also know that some of you even just believe in miracles but nothing else.
   I am here to tell you that I have been struggling in life. I have been in a 24/7 Ironman race. It is far from over and the week before Christmas I was getting fatigued. I knew that something somewhere was going to have to happen. I told close friends, I cried to my husband. I straight up needed a positive change.
   Without my knowledge my cardiologist had sent a referral to one of the teaching hospitals that is two and a half hours south of us. So, here I was exhausted and needing a break somewhere and my phone rings. I look at it and it says Unknown. I almost didn't answer, but, I did.
Me: Hello?
The Caller: Hi I'm, (I can't remember her name because my mind went blank), I am calling from,(will remain anonymous), I am calling you to say that your case has been accepted. Can you be here on Tuesday,(it was a Friday...so in four days),?
Me:???? Yes!
   Some how to spite my complete shock I managed to complete registration and schedule my appointment. I realize to someone on the outside it must seem like a fluke, an accident. To me it was a miracle. It was the breath of hope that I so desperately needed to keep going.
   I guess what I really want you to know is that there is no promise for an easy life in the bible,(yes I realize that you may not believe anything from the bible). But, even when you are in the darkest, most desolate valley, you are not alone. There is Someone always there. It is like a quest. It is not your job to question why or how. It is your job to find those people, moments and tiny acts of kindness that will give what you need to make it thru. I have thru every bad day and hard time in my life learned to look for those miracles. Some of you reading this have been that miracle that I needed. Thank you for allowing God to use you. Thank you for being a part of my life. As we all look towards the new year may your life be blessed. May you be granted eyes that see the hope that is around you.

Thursday, December 11, 2014

The Future

   I have felt this post coming for a while. I even started one and never published it. Sometimes it is hard to put my thoughts into coherent words. Today, as what often happens, something that I read brought me back to it. It was a post from one of my favorite bloggers. She shared a very intimate moment of sorrow and dreams of the future lost. In the last year with my sons diagnosis and my ill health one thing has stood out in a very surreal way, the future is unknown.
   We may have a false sense of comfort. In five year I will be living X working in X field. My son will be in X grade. So on and so forth. As humans we collectively feel sorrow when these plans don't come to fruition. A sort of grieving similar to that of a death of a loved one.
   For my son, I have no clue what that future will be. It is completely unknown. I am coming to peace with that. This is a journey you know? Sometimes, however, my own grief pops up unexpectedly. A good example is that I don't know if my son will ever read. I was,(am still), as happy as a kid in a candy store when I realized that he was ok with being read to out of a picture less book. Right now as I write this I am about ready to burst with excitement. I have been researching what to read next. The thought that even if he is never able to read the book himself he will still be able to hear the story. He will get to go on the wonderful adventures that books take you on. A very exciting win in my book.
   For me, even if I tried, I couldn't plan for my son's future. Will he ever live on his own, have a job, get married and have children? I don't know. But, do any of us really know for sure if any of our kid will? I want him to have the same opportunities as other people. I worry often about the world that he will be living in. I worry that people wont see his life as being worth something. I worry about someone feeling like they can define his quality of life and deeming it unworthy of life. I worry if I let myself. The future could be very scary so I choose to not dwell on it.  
   This year gave me a double dose of unknowns. Not just my son, but also me. I have been dealing with an unknown neurological whatever. I am waiting to see another Dr,(s), to hopefully get a diagnosis and perhaps treatment. Just knowing a little better what the future might hold for me would be a comfort. To spite my hopes I am VERY aware that non of us knows when our last day will be. I could die today for all I know. There is something to be said about living in the moment. Living each day like it is you last. If there is anything that I have learned to expect is the unexpected.
   To avoid constant grief I have had to leave some things unplanned. You can make yourself miserable if you dwell on the future.  I don't want you to think that I am saying that all planning is bad. I am simply saying that you have to think of plans as a rough guess that is flexible with change.
  For now I will have to be content living in the here and now. Waking up every day and trying to do my best whatever that may be.

Tuesday, December 2, 2014

The Couch

  I find myself getting sentimental this morning when I think about our couch.

  It may not look like much more than a run down beat up old couch from the '80's. I might complain about it frequently and about how much I would love a new one.
  Truth be told I love this couch. There, I said it to the world. I LOVE this old rundown couch.
  It is where I spent the first three weeks after each c-section sleeping upright. I have spent countless hours up with sick kids and nursing babies on this couch. I fell in love with my husband on this couch. The day that I found out that I was pregnant with my daughter, I told my husband while I was sitting on this couch.
  To put it simply, I have made some of the most important memories of my life time on this couch.
  As much as I would love a new one... I might just wait. Perhaps I can find someone to fix it up and recover it. I don't think that I am ready to part with it. A few more years of memories wouldn't hurt anyone... I wouldn't think.

Wednesday, November 26, 2014

For The Lost

   Today I am doing a shorter, (ish), post since I am far from home typing on my cell phone. In fact I will apologize a head of time for any errors. Today a story on my Facebook time line made me really wanted to touch on something very near and dear to my heart. That something that has brought me many tears over the last six years and it is wandering.
   I will give you some statistics. I am sharing these to educate, not out of fear mongering. Please do your own research too. According to the National Autism Association an estimated 48% of children with autism are likely to wander or bolt from a safe place. That is almost four times that of their non ASD counterparts. A staggering 91% of ASD children 14 years and younger who died during the years 2009-2010, was by accidental drowning. Most were due to elopement. Children with ASD are more likely to be drawn to water.
   If you haven't experienced this you might wonder how it could happen. And even question the parents ability to do their job. It's not that simple.  Some children are always in the bolting mode. A split second of looking a way can be all that it takes. Having to be in a hyper vigalert state 24/7 is exhausting. Not being able to even use the bathroom without your child being locked in the bathroom with you.
   Another example of elopement that is a bit trickier, would be a person who blots when they are suddenly overwhelmed. This is the type that catches you completely off guard. They may go months inbetween episodes. You may think that you are in the clear. Maybe, just maybe, they have out grown it. You relax your guard a bit. But, then you find yourself running in flip flops trying to catch them before the make it to a busy road.
   One of the scariest examples may be someone who when they suddenly become upset not only runs but hides too. Just as you give up and are about to dial 911 you find them and have to get them to calm down, so, that you can remind them that they have to answer when you call their name. You tell them how you love them and need to know that they are safe.
   You might get to hear from other parents how you should spank your child and teach them a "lesson." You on the other hand know better. You know that when your loved one leaves the safe place they are it is not because they are being definent, naughty, stubborn or malicious. It is much more complex then that. And your best defense is to try and get your loved one to realize that when the feel that way running will only hurt them.
   Maybe you also will find yourself praying. Praying for those who have lost their child in this tragic way. Praying for those who have someone missing. Praying for your child, that they will never become another statistic.
   Two days ago little 2 year old Malik Drummond walked out of his Searcy, AR home while his mom was bathing. As of this morning they sill haven't found him. He is whom I pray for today. I pray that, against all odds, he is found safe and alive. I don't know that there exists a solution for every case.  Remember the next time you come across a story like his that it could be you. It could be your child lost and alone. Share their story and pray. The more people who know the facts then maybe more people will pay attention if they see a child alone.

Lord have mercy on Malik and his family.


Wednesday, November 19, 2014

The Holidays

   Next week is Thanksgiving and also the official start of the Christmas season. For most people it is a time of year to dread. It is a time of crowded shopping malls and long lines at the stores. A time that is supposed to be filled with joy is instead filled with disappointments and failed expectations. I may be an odd ball, but, it is non of that for me. I get excited over Christmas, more than birthdays,(that deserves it own post). The forty days leading up to it is spent fasting,(according to the tradition of my faith). So when Christmas arrives the fast is broken and it is a joyus feast.
  I grew up in a bigger family with a father who was a seasonal worker. Needless to say that the winter months were leaner. No matter what though Christmas ALWAYS happened. It may not have been at the scale that other kids were accustom to but that NEVER mattered to me. I think in the long run that helped me more than my folks will ever realize.
   You might be thinking, what the gifts are the best part. My friend you are missing out on so much if you think that the gifts, perfect meals and Pintrest worthy crafts as the best part of the season. Now you are worried about your kids only focusing on the gifts then set the example and they will follow. I think that us parents underestimate the power that we have to influence our children's moods more often then we realize.  
   In our country there is also a negative association with not having things. If you don't have X then you won't really be happy. The reality is that having your basic needs met is a luxury that most of the worlds population doesn't have. Happiness is an emotion that comes and goes. True joy and contentment is priceless and not directly tied to things. In my life I have met people who literally glowed with an inner light. They had joy and peace beyond anything that I have ever seen. These were people who had very little. When I was younger I spend a large percent of my energy on trying to be skinny. This went on until I had an epiphany. That was that no matter what I looked like, what I wore, what I drove or where I lived true joy can only come from inside of me. It is independent from outward forces. 
   Since I became a parent I started from the get go, no matter how broke we were, to teach the kids to give to those who had less. I also realized that I wanted Christmas to be centered on giving, kindness, and love. Being religious we put focus on the Nativity of Christ. But, I also use it as a time to set a wonderful example of how to respect those of different faiths and those who aren't religious. My husband and I also agreed to have a lower spending cap. I have always said that when they are very little if you set the bar too high by the time they are teens you are done for.     
   Christmas is the one time a year that everyone believes in miracles, giving to others, (not necessarily material gifts), and being joyful. It is a time of year where hope is spread. Halloween even though it is fun is not about light it is about darkness and fear. As a stark contrast during Christmas time there are few places you can go that isn't full of lights. And just in case you miss all of this,(the love, joy, peace and lights thing),there is music about it.  
   My hope is that when my kids are old and grey the things that they will remember won't be the toys they got. Hopefully, it will be the memories of love. As you prepare to get launched into this next holiday season please take a second and pause. Think about the thing that you remember about this season that gives you joy. Look for ways to share that joy with others. Small, random acts of kindness can completely change someone's day. And perhaps without you knowing it will change you too. May the remainder of this year, for you, be blessed with peace, love, joy, kindness and goodness. May your dark winter days be filled with light.

Wednesday, November 12, 2014

Life Choices

  Frequently in life you have to make choices, sometimes big choices. When you are a parent it is even scarier because those choices don't just effect you. You are making decisions that can have long term affects on a whole other generation. Three years ago next month my husband and I made such a choice. We did it with out a crystal ball to see the many repercussions that followed like ripples on a pond from a rain drop.
  To properly tell the story I have to go back almost five years ago. The economy was almost at the bottom and the construction industry that my husband had come from was gone. I had taken a job working grave yard shifts at a local CVS Pharmacy. I would be up all night moving freight and up all day with a 9 month old and a 21 month old ASD. My husband would take on any odd job that he could. We were horribly broke and never used public assistance. Some may wonder how I managed during that time to potty train a moderate ASD boy.  Its called having no money to buy diapers. We couldn't even afford meat. We were literally on our last dime and I will never forget confiding in my co worker that one more month and we would be done, and homeless. Before that week was over, out of the blue, a man,(the one that my husband still works for), called and gave my husband a job. It was and has been a good job with good pay. I had prayed so much. For the first time in my life I truly began to believe that someone was listening.
   A year after my husband got this miracle job I was able to completely quit mine. My husband was also promoted numerous times and he wound up on the crew who went to Oregon every winter to mechanic. Also, the next year was supposed to be a whole lot of moves. With my husband working seven days a week we realized that we were faced with a huge decision. So, we chose to give up our rental and moved into a RV. My son was three and daughter was two. At this point we knew that our son was way behind on language and had a ton of odd quirks. But, neither of us had completely realized the scope or long reach our choice would have. I will never forget just how angry my son was. Everyone would say, "oh, just make it into a fun adventure," even after I told them that it didn't make a difference.
   We left the stores that he had always gone to, the church that we had always gone to and forced him into a new small space with over stimulating Laundromats. That year we moved our trailer six time in twelve months. He regressed and became more angry and withdrawn.
   By the time my son was five I knew for sure that there was something going on. At the time my husband was gone for about seventeen hours a day seven days a week. We were still in the trailer and I was trying to home school thru a local charter school. I told my husband that he needed to be assessed. And when we did sure enough he was diagnosed as moderately autistic with an additional language diagnosis and borderline ID. I had never guess that. The date that I got the call is etched in my brain as well as his birthday. It was February 12, 2014. I will never forget the women at the Regional Center telling me that he would need substantial support.  I thought that it was mild maybe not even autistic,(a paranoid mom). When we got the report it was seventeen pages long. I read it and my husband read it too.
   Like a lightning bolt from heaven, I remember realizing just how hard he must have worked to get where he was. It hurt, a lot. We realized that we had to find a good school and a house close to that school. And that even though my husband was down to six days a week that it would mean time a part. Miraculously we found his school and a teacher who loves our son. She is dedicated to helping him be the best him that he could be. We found a nice house in a good neighborhood that is only about five minutes from the school. Everything was coming together it was like a fairy tale. As they say, "all good things must come to an end."
  There was a fire. Not a house fire, but, a huge forest fire started by lightening. The company that my husband works for sub contracts to anther company that lost billions of board foot of timber to the fire. That means that they sent my husbands company to harvest it before it becomes rotten. I got to hold back my crying children as their dad drove away knowing that he would be gone for a week. When he gets home we would get maybe twenty hours to see him every week. That is including sleep time. My heart was torn in two. My husband and I were sure though that this was the right decision though.
  That brings us to this last weekend. I somehow missed that the kids were going to have a four day weekend because of Veteran's Day. Instead of my husband driving for hours to come see us we drove two hours to the RV and stayed until yesterday. I can't even begin to tell you how wonderful it was to be a family. My husband is the kind of husband that when he is around my life is a million times better. When I was much younger a very wise person once told me that you know that you have found the right person to be with if with them your joys are doubled and your sorrows are cut in half. As corny as it sounds that is what my husband is to me.
  Yes it is so much easier on me to have a washer, drier, dishwasher, space and a fenced in back yard. I would trade it in a heart beat if it meant being back with my husband in that thirty-one foot RV. The reality is that I am a mom and even if we are all heart broken apart, this is what is best for my son. He is over all happier with the stability and a good school. You can't forget that it also means no more Laundromats,(yay). I may not know what the future may bring, (until I get a working crystal ball), I will only be able to do the best that I can with what I know. Anyway that is all any of us can ever do. I will end this post with an appropriate quote, "Love is unselfishly choosing for another's highest good," C.S. Lewis.
 

Wednesday, November 5, 2014

When The Cost Is Too High

   It was summer of 2010. I will never forget when I first heard the news. I felt like I had been kicked in the stomach.  At the time my son was three, my daughter was two. I was working full time graveyard shifts and up all day because my husband was working too. It was two years before my sons diagnoses. I was exhausted all the time. A women had driven to where we used to live, to drowned her three year old daughter in our local river. The thought that some one would kill their own child was horrific to me. It was the first time where an act of violence had shaken me so much. I cried, I prayed and I cried some more. Her name was Sophia,(I will never forget her name, may her memory be eternal), she was three and now she is in the arms of the angels.
    Far too often, since then, have I paused and cried as I hear about yet another child. Children who have left this earth too early at the hands of their mother, father or care giver.  Frequently, drug use and mental illness is the catalyst. Some times it is burn out, a parent whose cries for help have gone unanswered. The tragic part is that no matter what the cause is the end result is almost always the same. A dead child, a torn family and a nation asking why?
  This morning I came home from taking the kids to school and scrolled thru my Facebook news feed. There is where I stumbled upon the story of yet another victim. A little boy the same age as my son and autistic. He was thrown from a high bridge not all that far from where we live. He was from all reports a sweet child. The mom was burned out, not by her son, but from her husbands health problems and financial struggle. She had a mental break and heard voices that told her to do it.
  The autism community seems to be frequented by this kind of occurrence more than any other group. Oddly though when the victim is an autistic child the media not only jumps all over it, but, it immediately spins the story in a way that the victim becomes the victimizer. The cause of the tragedy that gets thrown around is caregiver burn out. So, that you know of course, if any other person was in their shoes that they would have done the same. There tends to be very little emphasis on why the other parent, grandparents, aunts, uncles and even teachers for that matter didn't see the impending tragedy. When you victimizes the victim it takes the blame off of others. Ultimately, it sets us up to keep repeating history.
  I do not want you to think that I am implying that mental brakes and caregiver burnout aren't real conditions. Because it is a huge contributing factor in these tragedies. What I am saying is that there is never an excuse to hurt or kill a child.  Every parent, SN or not reaches a point where they are overwhelmed. It is how they deal with those feelings and emotions that make all of the difference in the world. We as a nation have to step back and accept blame for not protecting these children. Going back to Oregon and London McCabe. He was thrown off a busy bridge where other moms in the past have thrown their children off. There were motorists that saw her dragging him right before and yet nobody stopped. This cycle has to stop.
   Until our country changes and the system changes we have to look out for each other. The person next door, the coworker, our families and our friends. If we all stand up and say no more, never again. Tell each other that we will listen, hold your hand, watch your kids and if you are at the end of your rope give me your children, no questions asked. We are the first line of defense.
   I am going to ask you a favor if you are ever in a place where you are hearing voices, feeling like you are going to hurt yourselves or your child please, PLEASE call the National Suicide Prevention Lifeline at 1-800-273-8255. If you need a ear to listen to you, message me day or night. You can also call 911. I you are reading this and are in a good place let everyone that you know, know that they can call you. We all have to keep our eyes and ears open. sometimes the call for help is silent . Rest in peace little London may your death not be in vain. Every life has value, please choose life

Wednesday, October 29, 2014

Wednesday Confessions

   I have a confession. I was going to post another more controversial post and I chickened out. Somehow the words seemed too intense. I feel that far too often, in this online world that we create, folks forget that the other person is real too. They are somebodies mother, daughter, granddaughter, aunt, friend and wife. And, well, some of us can rip each other to shreds in an animalistic fury. I have news for you, all of us are doing the best that we can to live this life we are given. Often our best sucks and we get knocked down a few notches. When that happens then all that we can do is wake up the next day and try again.
   Sometimes, our life isn't what we expected or what we thought that we signed up for. When that happens we regroup, try to learn what we can and go from there. No ones life follows the same exact path. There may be times that we arrive at the same point in time at the same moment. How we got there was different and where we go from there is different and unique. My point is that no two life experiences are the same. Everyone's experience is valid. It is up to us to realize and accept that basic fact about life.
  How do we accept it? Perhaps it starts when we begin to see that each and every human life has value and deserves dignity. One of my favorite Dr Seuss quotes from Horton Hears a Who,"a person, is a person no matter how small." All of us have value.  When we tear apart and put eachother down nobody wins.
   I suppose to summarize what I am trying to say. I didn't post what I had been writing because I didn't feel that I could say what I was feeling without it hurting someone. You all have more value than that. The autism world is very polarized. You are taking about normally confident people who have been throw into situations, packed with emotion and uncertainty. The one truth that I beg you to remember as you interact with others, online or in the real world, is that all experiences are valid. With mutual respect we can learn from eachother and hopefully grow to become a community of friends.


Wednesday, October 22, 2014

A Sad Lonely, Loner

   If you ever wondered about the loner at the school pick up, you know the one all by herself?  That would be me. You might wonder why my face is buried in my phone instead of talking with all of the other moms? For starters I have over the years realized just how different my family is. The husband works out of town in the timber industry. My son is ASD, SPD, APD, Anxiety and other language disabilities. Then there is the daughter. She is a social butterfly and is very...er...verbose. The husband and I use to joke that is she was ever kidnaped they would bring her back because she would talk their ear off. Then there is me I am a people person but I have noticed as I have gotten older that I just don't have "It" to add to my other long term friendships and family. I am doing good to maintain those relationships. Plus over the last two years I have had to have two operations, I am currently dealing with a neurological disorder, my son was diagnosed and both kids started school. Let us just say that I only have a little bit left to give and today is probably not your day.
  To be completely truthful since my sons birth I have always felt like an outsider looking in. All of the stuff that other moms would look down at me for, "what he isn't sleeping thru the night? Mine was by 3 months!" His diagnosis explained it and gave me a direction to find my tribe, others with an ASD child . Those in my tribe are the ones that get my love of all things coffee. They also get why it's hard to hear someone with a new born complain about them waking at night. I case you were wondering, my 6 year old still wakes up at night. During any major change I will have nights where I don't even get three hours at a time. Another funny thing that I have noticed and I know that I used to do it too...teeheehee. Is that the word autism is mentioned, by non autism families, in a hushed tone like they are talking about a mythical creature that will appear if its said too loud. AUTISM, autism, autism. Dang it, nothing happened. Oh, I think that I was supposed to say Rumpelstiltskin?
  To make my world just a little more awkward my daughter started Kindergarten this year. With that I was thrust into the neuro typical world. You know the one where your kid remembers the names of kids from school, you are asked to volunteer in class, cross country meets to go to and well things are typical. I now straddle two worlds one with IEPs, SLP, SDC and a whole lot of acronyms. And one with a ton of socializing. With the hubs being out of town I am stuck dragging my other kids to loud people filled places. Sorry folks it is a little hard to interact when you are covering your sons eyes and ears while rocking as you try to block out the overwhelming sensory input. And no my son is not being naughty he is over loaded and crying because it hurts. My son is sweet and caring but, when its too much he turns into a scared wild child. I know that I am not the only one. There are many families that straddle the two worlds.
    I'm not really sure, but I suppose in time I will get to know some of the, "other" school moms and I will get better at the interactions. Shoot, I might even follow my daughters lead and learn a few of their names. Until then I will stand alone. A not so sad lonely, loner enjoying my last few minutes of quite. Hey you never know maybe I'm just standing there writing about you....


Wednesday, October 15, 2014

Who Am I ?

   Who am I? I am a thirty something stay at home mother of two. I am new. New to the autism world and new to the blogging world. My college 1A teacher Ms. Adams would probably say that I should never join the blogging world. Something about my writing not having, "sparkle", lucky you.
    I was never even a reader of blogs until I started down the crazy rabbit hole called autism. Once I realized that there was a whole network of other moms and dads who had, "been there done that," I couldn't stop reading. At times hearing what the other families, like mine, have gone thru were the very words that I needed to make it thru the day.
   My son was diagnosed eight months ago as moderately Autistic. He has additional language and learning disabilities. You often hear that knowledge is power. That is quite the understatement.  For me that seventeen paged report was not just empowering, it was life changing. For almost six years I had been living as a special needs mom of one with a barely a year younger sister. I had the same struggles with zero support. My son missed out on five, almost six years of early childhood interventions. I had weeks, nights and months where I was at the very end of my preverbal rope. The day that I got the diagnosis I realized that my son was trying and doing extremely well with what he had to work with. I was not a failure and neither was he.
   As I began to read blogs and other pages about autism, I had epiphany after epiphany. New thoughts began to sink in. I suddenly realized that I was the, "they." The problems that I had always thought of as "THEIR" problem was also my problems and challenges. This is the world that my son is going to grow up in. Did I really want him treated as a broken, damaged person?The world that we live in is not kind to those who move to a different drum. There is a constant push to conform. Before I threw around ideas and words that weren't hurtful to me. It wasn't me or my beloved child that I was hurting...little did I know that it was.
 Today is  new chapter. I may never be read by anyone, but, I will write words anyways. If by some off chance there is someone reading this, welcome to my crazy world. I am just another blogger and mother of two, who plans to change the world, one person at a time.