Tuesday, December 1, 2015

Time Of Death

   Okay guys that is it, I am calling it. Time of death 12:35pm, December 1, 2015. It is time to put to rest the BS line that I have been telling myself for years. This belief that I can measure myself by myself. "As long as I keep going forward and meeting goals." Well I am done. I am sick and tired of being told that I should be something better.
   Who the heck defines that elusive better? I am READY to say NO MORE. Suffering is a part of the human experience. We all suffer. Why are we so shocked when we are reminded of how fragile life is? Defining our quality of life by things that we have or can accomplish is....well stinky dog poop...BS is too nice of a word.
     At some point, as I reflected on my last year of life, I snapped. Most of what traps me is my guilt because, from the outside, my life is not better. I am at the bottom of a bottomless barrel. I have a growing brain cyst, I have damage to my hypothalamus, my thyroid is suffering because of it and I have two solid thyroid nodules. I have gained over 50lbs and am unfit for the first time in my life.
     Yet, I have learned thru it all that I am very in-tune with my body and knew what was there before they told me. I have learned compassion towards others with chronic illnesses. I truly appreciate every good moment that I have. I have learned that my husband will really love me thru good times and bad. I have learned humility and am able to voice when I just can't do it...whatever that it is.
   Most of all I am thankful. Thankful for the strangers that are now dear friends. Thankful for my friends who have stood by patiently willing to be a kind voice when I need it. I am thankful that to spite my dark and painful moments I have been able to rise out of it. I am thankful for the prayers and thoughts that are sent on my behalf everyday.
    So, you are dead and gone GUILT. I am free from the heavy weight, of the BS line that I have somehow failed. I am done mourning what I have lost and I am ready to celebrate what I have gained.    

Thursday, October 22, 2015

The Sibling

   Who is this sibling? She is the other half, a twin who isn't a twin. She watches out for her brother, she is always the eyes on the back of his head.
   
 
    Often she takes backseat to him. I hate it, but, his needs come before hers at times. She learns how his differences change the ways that he interacts with others. When another kid's feelings get hurt she is first to say that he is "artistic", that his brain works differently and that it is okay.
   
 
   All of the times that she couldn't go to events. All of the play dates cut short and friendships that ended from lack of understanding. She never complained, never whined and never blamed him.
 

   When her feelings are hurt, as I dry her tears, there are times that she just doesn't understand. I tell her why and that he was trying. It is so much harder for him...peopling is hard. They fight often, but, they will always be united against the world.
    I saw something in her, perhaps it was a glimpse of the future? She walked her brother to the service counter. She gave him the extra bit of help that he needed. I watched proudly, with a smile, not wanting to interfere. It gave me peace, it gave me hope.
They 
are 
the 
future.  

Saturday, October 3, 2015

Roseburg

I started writing this last night on my tablet. This was hard to write but I felt that I needed to.

   
   I have had a very busy day today and I am grateful. What little bit I was online I spent a chunk of it hiding posts from my timeline. It is because Roseburg, Oregon is a place that I know well. It is not some distant city that I am only hearing about for the first time like most of you. Many people that I love live there. My family has spent several winters near there. The Roseburg area is our home away from home.
 
Taken at the "Train Park" also known as Steward's Park. In Roseburg, Oregon.
    When I got the call confirming my son's Diagnosis we were staying about 19 miles south from there. Another family that I know thru the sweet church up there, is also an autism family. The mom was an amazing, kind and friendly face that got why our family is different. Their oldest daughter was in the building next door to the shooter. One of the dead could have been her.

Taken in Roseburg, Oregon two days after we got Bubs' diagnosis.
   I am pro gun, but I am also pro gun law. The conundrum that our country is facing is how do we stop this? This has to stop now. Is gun control going to stop it? I don't think so. I think that the problem is far deeper. We now have a generation of adults where we are exposed to war daily without experiencing it. We see violent crimes daily. But it isn't our loved ones dying. We can tear people down with our words. We can stir up hatred. We can tell others to commit heinous act of violence. All from the comfort of our homes, with the help of the internet.
   This resounded to me this last September 11. Before September 11, 2001 we were so free from fear. I never thought twice about public shootings or bombings. I was never fearful to go to a movie theater. The horror of that day felt like a sharp knife cutting thru our nation. It was something that we never had experienced.
We are numb.

Fishing on the Umpqua River a few miles from Roseburg, Oregon.
   I can't even tell you how much my heart hurts. I have tears instead of words. Change must take place now. Our country needs to talk about it.

A picture taken by Kid #1. He even picked what I was doing.
  Roseburg Oregon is a small community of mostly loggers or mill workers. I can guarantee that everyone either knew a victim or someone who was on campus.  Whatever change that comes from this horrible tragedy it will be too late for them. My thoughts and prayers are with that small community. May the souls of the victims find peace and their deaths not be in vain...May their memory be eternal.
Quinn Cooper, Jason Johnson, Lucero Alcaraz, Larry Levine, Lucas Eibel, Kim Saltmarsh Dietz, Rebecka Carnes, Treven Anspach, Sarena Moore

Friday, September 11, 2015

September 11th

  Where were you when you first heard? Do you remember that doomed day as vividly as I do? I remember that I had just sat down to catch up on the morning news. I flipped on the TV and left the room to get my first cup of coffee. When I came back in and sat down it took me a few seconds to realize that the scene before my eyes was real. The images before me looked like a clip from a King Kong movie.
   One large passenger jet was crashing into the first Tower. Before I could even catch my breath the second jet went into the second Tower. It took a few more seconds for me to realize that it was real and that it was a replay of events from even earlier in the morning.

 That morning was the first time ever that I had ever felt that level of sorrow and shock. 

   As the doomed day unfolded the details only made the horror worse. The hundreds of firefighters who died as the buildings collapsed. The third jet that was crashed into the Pentagon and the fourth Jet that never reached it's target. All of those lives lost here on American soil, where we should have been safe.
  That day in September was so quiet that it was eerie. All of the flights thru out the country were suspended and everyone was staying off the road. I remember that the classes at the local college were canceled so that people could stay with their loved ones. Everyone was glued to their TV's trying to make sense of it all.

I wept, our country wept...Our innocents was taken from us forever.

  Today is September 11, 2015 and I still can't believe that it has been fourteen years. During those years our country has never truly healed. Instead our fears have only grown stronger and deeper.  A new generation of adults have grown up not knowing what it is like to live in a world free from the fear of terror. We live in a state of constant vigilance. Fearing for a repeat of 9/11, or, something even worse.
   As our nation pauses to remember the anniversary of that horrible day, take a moment and hug your loved ones. Send prayers of peace for those who don't have their loved ones to hug anymore.  I will never forget. we, as a country, must never forget this tragedy. Or the lives lost that one day in September will be in vain.



















Thursday, August 27, 2015

Anxiety

Dear Anxiety,
  
  As we all know, I hate you. This morning when you made my son not want to go to school, it was the last straw. You took advantage of the social exhaustion from last night and my over sleeping this morning.
  In a Star Wars moment, it is safe to say that my father has it, I have it and my son has it too. It is a force but, not the right kind.
  Please see this letter as a declaration of war. I will not let you control my son anymore. I am on an all out fight against you. Except the fact that you WILL loose. If the fight lasts my life time and into my here after I will be victorious.
   You are done, WE are done. Please clear out your things, Peace is waiting to take your place.

Good Riddance,
Me

Thursday, August 6, 2015

The Empty Chair

   

 "Children with any type of disability are 3.44 times more likely to be a victim of some type of abuse compared to children without disabilities" The Arc

This is a very personal post. My purpose in sharing my experience is the same as any post I write. I want you to hear about my experiences, in the hope that thru my lesson you might be saved the pain. Hopefully someone who reads it either has an "ah, ha" moment or feels less alone. If when you read this it reminds you of your relationship I urge you to seek help. http://www.thehotline.org/ or call 1-800-799-7233.


   Being in an abusive relationship is sometimes as hard to identify as it is to identify that your child has autism. You hear about the signs and it is frequently brought up in the news. Yet when you see it you find your self having thoughts like...Doesn't every kid line up their toys? Doesn't every kid flap their hands? Isn't it just because he is a boy? Often times when you are in an abusive relationship you find yourself in the same line of thoughts. Isn't it normal for a man to constantly call and text you IF he ever let's you go somewhere alone? He hit me in the face, but there wasn't any mark? It isn't really abuse if I'm not in a bloody heap on the floor, right?
  When you are in an abusive relationship slowly, subtly you are pulled away from friends and family.  It happens over years and it is ALWAYS your fault.
   It starts out as him being helpful then you end up not being able to go anywhere without him. You can't spend a dime without him WATCHING every cent.
   He starts to control what you wear, how you do your makeup. That too is a subtle change it starts as a compliment, a small suggestion, that eventually changes who you are in the fiber of your being. You reach a point where you don't even remember what makes you happy

Still you don't see it.
  
  You aren't a bloody heap in the corner. How can this be abuse? Yet you aren't able to breath a word of opinion without the flipping out and calling you horrible names. How dare you. He hits you for it. But, it isn't abuse, right? You don't call the cops because he is afraid of loosing his job. You still can't see it. So slow and subtle. You are physically sick your head hurts you stomach hurts you can't sleep at night. But, you still can't see it.
   Many woman will never see it and a percentage of them end up dead. The lucky ones some how get out. It may taking finding out that he has cheated. For me it was seeing a friend who was happy. In a moment of clarity I knew that I had to leave. He was escalating and I knew that it was only a matter of time before I WAS the bloody heap in the corner.
   I was too afraid and too ashamed to tell anyone. I almost went back to him at one point, nobody knew the secret hell that I was living. They couldn't see why I was leaving. It wasn't the first abusive relationship that I have been in either. The other one ended before it got too bad. This time it took a friend of mine to help me say no and stay strong. I will be forever grateful for her support and love. I promised myself that if there was anything good that could come from my experience was that I could help someone else. Give that love and support that they needed to make it thru.
  
   So, why am I sharing this? That was almost a decade ago. I don't plan on ever calling the cops or pressing charges. I am STILL afraid of him. I am constantly fearful of running into him and him seeing my children or where I live. Yet I am finally beginning to speaking publically and sharing a part of my story, (there is much more that I can't talk about yet). How is this related to autism? People with autism are easily a target to be in this kind of relationship. We have to educate our kids about it.
    I am also writing this in the wake of the 35 women who have come forward in the Bill Cosby sex scandal being featured on the cover of  New York Magazine. If you look you will see an empty chair it is for the women who haven't come foreword and the 11 others who were too afraid to have their picture taken. I had already started this before I read this piece by  on Refinery 29 . I was a crying mess and didn't want to finish it, but, I did. That empty chair is for me too. No, I was never hurt by Mr.Cosby, but like these other women I spent almost my whole life hiding in the dark with hidden scars. Why did they come forward after all of these years? Maybe because they were done with hiding in the dark too?

  

Wednesday, July 22, 2015

Expectations

  
expectation
[ ˌekspekˈtāSHən ]

NOUN
noun: expectation · plural noun: expectations
a strong belief that something will happen or be the case in the future

    From the moment that we first find out that we are going to become parents, we envision what that may look like. We dream about their first words, first steps, first day of school, first date, first car etc... I really could go on. For many of us those things never come. Or, if they do come, it looks a lot different than we had expected.
   I frequently hear other moms mourn the lack of those expected events that most people take for granted. They feel the painful sting of the missed birthday party invites and the disappointment of the ones that ended in tears. The mourning doesn't end there though. What about prom, graduation, driving...yes another big list, right? I know that we have all felt it. 
    
mourn
 
[ môrn ]

VERB
present participle: mourning
feel or show deep sorrow or regret for
feel regret or sadness about (the loss or disappearance of something)


   For special needs moms Facebook is both a blessing and a curse. It is a wonderful way to not feel alone or isolated.  On the other hand there is a bad side. We find ourselves hiding the other posts. You know what I am talking about. The, "Oh, my five month old has been up twice a night from teething, how will I make it!" While you are sitting there thinking that you can count on one hand the nights that you have gotten a full night of sleep in SEVEN YEARS. Depending on how much support your child needs, instead of bragging about your kid being a honor student you are bragging that they put their own cloths on.   
    Special needs moms and moms of typical kids alike take wayyy too much credit for their child's success and failure respectively. This is a big source of heartache, for some of us parents. We feel that everything about our child is a direct reflection of us. But, in all reality it isn't. Yes we influence them, but they choose. Sometimes, (often), there isn't even a choice. We all have our strengths and weaknesses. My son may not be an honor student but he is extremely kind and companionate. I call it a win.
  I think that the only way that we can really over come the disappointment from failed expectations is to radically redefine what our expectations are based on. We have to take this mold of what we think that our child would have been or should be and throw it onto the ground. Stomp on it a bit, (free therapy). Then slowly, with patience for ourselves and our kids redefine our expectations to what really makes our kids happy.
 Take a second. Think of one experience. Think of what that event looks like. Now imagine the look on your child's face, on your face and on the faces of the people around you. Do they look happy? What would the look on your child's face REALLY look like if they were there? Not so pretty, am I right?
   I am not promising that it will be easy. There will be work and it isn't a one time thing either. It is a constantly morphing, balancing act. I still find myself frustrated, followed by anger, then mom guilt and repeat. That is where the good side of Facebook comes into play. Having a safe, judgment free space where others can listen to your vent and give you the it's- ok- we- have- been- there pat on the back that you really need.
   Today at Costco I saw a man in his forty's with cerebral palsy. He was in a wheel chair and with his care worker,(respite?), having frozen yogurt. He was slowly, carefully, feeding himself. After a while the lady who must have been his mother, (she had the unmistakable look of love in her eyes), showed up. I heard a waft of their conversation. The caretaker was telling his mother that he had done well. The mom must have been in her late seventies or early eighties. I saw her shake her head in approval and she looked happy.
   Her story is not much unlike all of our stories. We have a child.  That child grows up and we love them for who they are no matter what that is. We mourn the disappointments and then we move on. The little things that make them happy we are happy for. Even if it is something as seemingly small as feeding themselves frozen yogurt.

Sunday, June 28, 2015

A Life Update

   Life for our family is intense right now. In fact I can't remember when it was last slow. After thinking really hard I think that it may have been last August, right before my first hospital stay.  I am on auto pilot right now trying to conserve and just get by. Here is an update...
    The verbose one finally has an appointment with an ENT, July 10th. She has been having a harder time hearing lately. So, we are very anxious to have a game plan set up.
   We had her birthday party yesterday and it was good! There were fifteen or sixteen kids there once you add on siblings. It was mostly class room friends. It was sweet to see just how close they all were. It was a sensory overload for my son. So, he hid in he room for the most part. I knew the night before the party that I had over done it. I pushed thru and by last night I couldn't walk without off the charts pain. Today I have to be sitting with my feet up all day in hope for a normal day tomorrow.
   My son has been having a hard time still, we are just riding the storm. Now that the birthday party is over I am going to switch my shopping to days when he doesn't have to come. It is really hard to see him in pain. I have a feeling that his future might include a cabin in a small town. That is where he would be the happiest. We have begun the process to have him institutionally deemed. It is something that all autism families should look into. It will make it so that once my son hits eighteen he will be eligible for State assistance if he is unable to work. It made me physically sick to make that decision. But, I know that I can't let my own pride hurt him in the long run. Some of his disabilities that are in addition to his autism may make it so that he is limited as far as working and driving are concerned.
   The husband is currently working two hours away and coming home every night. It is already starting to take its toll. He is doing the four hours of driving six days a week on top of ten hour work days. They are in the process of setting up a camp spot closer for everyone to park their camp trailers. When that happens we will be spending part of the week in the mountains and part of it at home until school starts again.
   I am in a holding pattern right now. I am on a steroid to up my blood pressure. It really sucks and I tried life without it. After four days I went back on it. Having super low blood pressure is really hard. My cardiologist used the word "chronic" which made me cringe.  I hate medication but I don't trust "natural" remedies. I am doing everything nutritionally that I can . The last doctor that I saw felt that it is viral damage that may of may not be permanent. If I heal it may take years. I will have to just do what my body needs and be patient.
   I guess that about wraps it up! Our little family into a not so little nut shell.  I guess that you can tell by the length of it that it couldn't fit in a normal status update!

Sunday, June 21, 2015

For The Fathers

Father's day is right around the corner and I wanted to be more prepared than what I was for Mother's day. This post was written over several days. I have thought about writing about my own dad. But, I think that it should be in a different post. This one will be about the man that my kids call dad. I haven't really talked about him much, so, here it is.

   What is there to know about the husband? He is my other half, a loving dad , my best friend, a kisser of booboos, a warm cuddle and someone to play with. I can sum him up in one word... Love. When it comes to our kids he is their everything.
   Six days a week he wakes up at 3:45 am and gets home at 6pm, he never complains. For now, we have decided, for me to be the stay at home parent. It is so hard to watch him work his bottom off to make ends meet. His one day off we try to let him be so that he can sleep. Once he is up he spends his time playing with the kids. Nothing makes me happier than the sound that they all make. Laughter is the sweetest music.


 Everything that he does is for them, for us.


   When I am tired and grumpy he tags in with his gentle voice. Every night before he goes to bed he slips into the kid's room to check on them. More than once, when they were babies, he woke them as he was kissing their little cheeks goodnight.
   I remember, before our son was born, just how adamant he was that he wouldn't change diapers. After the long labor and my emergency C-section, he was the only one who changed the diapers for the first four days. Those were the first of many diaper changes to come.

Right after my emergency C-section.
  When the verbose one was only nine months old I had to go back to work to help pay bills. I was working graveyard shifts five nights a week. For two years he had night duty, with both kids, for five nights a week. He changed many diapers and gave bottles. I honestly think that he bonded in ways, with the kids, that wouldn't have happened otherwise.
   Yesterday my niece and nephew-in-law became first time parents. The delivery was much less than ideal, but, both mom and baby are alive. It brought back emotions and memories of the less than ideal delivery of my son. I realized just how much of being a parent happens on that day. You are almost reborn thru the pain of birth. 

My husband and son on a fieldtrip.
  The special needs dads out there that are active in their children's lives, you are my hero. Your level of dedication and love is more than I have ever seen in any other group of dads. On behalf of all of the children, moms, grandparents, communities and the world, I thank you. I hope that you get to spend the day with your loved ones and that your day is blessed.

   


Sunday, June 14, 2015

The Summer Regression

   When I started this blog I did it with the intent of someone out there going, "Oh, that's me too!" We went for so long without a diagnosis. My son missed out on early childhood interventions. More than that we went for years with the condemnation, hateful stares of strangers and the general frustration. We had years of knowing that we were doing everything right but with the opposite results. I don't want anyone to go thru the same thing if it could be helped. Sometimes that includes sharing the hard times.
  With school ending and change in our routine he has regressed. To be honest I expected it and yet I am still surprised. I know, right? He is seven you would think that I would be past this, but...NOPE.
   His OCD has become more pronounced and the anxiety is thru the roof. Getting him out of the house to go to a, (the evil "P" word), party today. Once we were there he tearfully refused to get out. I had to get him out of the car, it was too hot. After he was out I ended up having to hold him, on their front lawn, in the shad. I rocked him and calmed him down. I had my internal moment of frustration. I knew that he was just wasting energy and once inside he would be ok. Once I knew that he wouldn't run I let him go and guided him to the front door. He almost didn't want to go inside. He was coaxed in by the birthday boy's dad. He had to look at the crawfish. It took a full hour to get him in and out with the other kids, but, he did it.
   This is where I think that my thinking splits from others. My son, my sweet son, is struggling. Yes, I think that this might be the last year that I will have the strength to hold him. That terrifies me. But, not once do I blame his autism for it. Perhaps, it is a gift from waiting so long for his diagnosis? I am simply looking at him as him and have never thought twice.
    At the birthday party I found out that one of the verbose one's classmates had a little brother that is about to be evaluated. I talked with the little boy's mom a lot. It brought back memories from when my son was little. Her son actually interacted with my son which surprised her. My son has a special way with other kids with special needs. I think that it is a gift that he has. Thru his own struggle he is learning something that I could never truly teach him, compassion.
  As I told that mother, new to our world, there is a constant ebb and flow. So, we ride this wave of unknown. My son struggles, I struggle, our family struggles. I know that the wave will peak. Where it leaves us at the bottom? That I can't answer, only time will tell.

Friday, June 12, 2015

An Open Letter To You

Dear Everyone,
 
  I appreciate everything that you are trying to do and say. But, I need you to just stop. You might wonder what is the best way to support me? That is a huge, loaded question that I might not always be able to answer. Okay, maybe more like, I am NEVER able to answer it. I can tell you what I don't need you to do. These are hard fast things too. If you stop and think it might just be the way you don't want to be treated. I might not even blink if you do one of these. I am a VERY forgiving person and feel bad if my feelings are hurt. However I am reaching my breaking point. I might jump and give a sarcastic response back... then feel bad later... even if you were out of line.

Here is my little bit of advice if you want to support your friend. These are things to NEVER do.

1. Don't judge me.
I am doing the best that I can for what I have on my plate. If you think that you know everything that is going on with me, you don't. I may seem like an open book; I'm not. There is a lot that I never tell anyone. You may think that you have come up with some new way of eating that is THE only way... I can almost promise that I have already tried it.  So, don't judge me, I'm not judging you.

2. Don't push your church or beliefs.
   I have a priest. I go to my own church. It makes me feel like you think that I am not a REAL Christian. Guess what you aren't Jesus. If I was wanting to go to your service, bible study, church anything, I would ask. I will never ask you to come to my church instead of yours. That would be rude. Instead of bringing me closer to God you are hurting me.

This is a biggy, so, commit this to memory!

3. Don't offer medical treatment options unless you are asked.
  I have done the gluten free, grain free, whatever- you- can- suggest. No a chiropractor can't fix it. It doesn't matter if it is my son or me.  If you have suggested it so have others. I believe in God and don't feel that I need science to confirm it. HOWEVER, when it comes to everything else I rely on science.

4. Don't try to change my mind.
   Please see above...SCIENCE

5. Don't bring up anything that is serious.
   Incase you haven't been reading my stuff lately... I am up over my head with serious. I think, breath, eat, drink and dream about serious stuff. I want to only discuss silly, funny stuff. Coffee and chocolate are appropriate topics too.

6. Don't want to get together with me unless you want to hear me spill my guts.
   If I am having a day where I need to talk, it might come on without warning, Then be prepared to listen. Don't try to fix it because you can't. Just listen and give hugs.


If you have been brave enough to make it thru this letter you might realize that you and I are much more a like than you realizes. I hope that if I happen to do one of the above, feel free to whack me on the head.

Monday, June 8, 2015

Stress Soup

  I have had to step back and not write so much lately. I am not well, to be honest. I walked up to the scary pick up gate at the kids school to hand out the verbose one's birthday party invitations. I was almost surprised when one of the moms asked me, " what the heck happened to you?" She was referring to my twenty-four hour heart monitor that was strapped to me.
  I have come to the point when abnormal is my normal. I don't even ... yah normal? Bwahahaha,(insert maniacal laughter). I have added medication to my already disliked line up. When I saw my cardiologist last week he talked about upping the steroid that I am on... and I wonder why I feel stabby... a lot lately?
 
   Today I got to go in a have an ultrasound of my carotid artery. Tomorrow is a tilt table test and I am not even remotely excited about that. Google it and you will know why. Go ahead I triple dog dare you.  Because of the test tomorrow have had to stop my steroid. That means that I am very sleepy today. Darn low blood pressure!!!
   
   I'm guessing at this point you have figured out why I haven't been writing... I am whining. Yes I would like some cheese with my whine.
  
  The kids are out of school for the summer. They are both having a rough transition. I really want to take the school board members into my home just so they can see how hard change is for autism families. I think that they might reconsider starting school back up for a couple weeks only to have a long Labor Day weekend.  
  Well, here is to tomorrow! I will be in and out of my Facebook page. There is a chance that I might have to stay and it not be an out patient thing. Send all of your good thoughts, prayers, juju and what ever else you can send my way.  Oh, I won't complain if there is chocolate and coffee either... feel free to consume it as a sign of solidarity.  

Sunday, May 24, 2015

The Fall

" Everyone that you meet is fighting a battle that you know nothing about. Be kind always."

It was a stormy day and dark clouds dominated the sky.

   Our biggest enemy is ourselves. I have said it before, we become our children's inner voice. We choose what that sounds like. Every interaction is a permanent mark on their brain.
   If you choose to be negative and unloving; the person that grows out of that is damaged. It may not be tomorrow or the day after that, but, the damage is there. It hides and waits for its chance to do harm. Like a grape vine on a tree. The vine takes root and slowly chokes the tree out until there is no tree left.
  When that, (now grown child), goes their lifetime without that vine being trimmed; the tree crumbles and falls.  Sometimes it is the person that you least expect. The crisis that ensues is a controlled chaos. You are left in an exhausted heap on the floor.
   How do you move foreword? You can't un see the brokenness, it won't just disappear. Finding help is an overwhelming task. Yet it is your only real solution.
   We have to take it one tiny step at a time. Someone told me the other day little elephant bites... one tiny elephant bite at a time, (yes it fits). I can do this and so can you. This is a part of life and this is true love.

Sunday, May 10, 2015

Moms

  Since today is Mother's Day I have been thinking about what makes a woman earn that title. You frequently hear the phrase, "Anyone can be a father, but it takes a man to be a Dad." The same sentiment goes for moms.  There are so many things that make a mom, well, a mom. The older that my kids get, the more that I realize just how small of a roll pregnancy and birth actually play into that title.
   My oldest was an emergency C-section and my youngest was a planned C-section. There were only three months between my pregnancies. I felt a huge load of guilt. I had several friends who were pregnant at the same time. They had fast deliveries without complications. I fed into the beliefs that I had heard. If only I had used a midwife? If only I had cut out dairy in my last trimester? The thoughts were looping in my head... Non stop. The reality is that no matter how your child makes it into the world, they are alive. End of the story.
 
As time has gone on, I have found that nobody talks about it. No one cares about how your six year old was born.
   None of that matters now.
  
  One of the other factor that doesn't diminish or make your momhood less... mom like, is how you became a mom. How you got pregnant or if you adopted doesn't make you less of a mom either. I also know quite a few step moms who are far more involved than the birth mom,(aka womb donor).
   Being a mother has very little to do with how that child came into your life or how they came to be. What matters is what you do after he or she does.
  You become a mom during the sleepless nights spent comforting. All of the countless hours you spend making sure that your child's needs are met. The everyday, mundane tasks that we don't make a grand event of. Those are the moments where your love grows. That is how you become a mom.
   I want all of the woman out there to who aren't able to ever carry a baby within their body to know, you can still be a mom. The life long, unconditional love is what defines a mom.

For those who are, those who have yet to be and those who have been. May your day be blessed and your love honored.
Happy Mother's Day!
  

Monday, April 27, 2015

To My Son's Teacher

  When you are the parent of a child who has special needs, you quickly realize that it will take an equally special teacher for them to be able to learn. The thing that makes that kind of teacher so special, is something that can't be bought, taught or sold. It is a special spark that only a select few possess. That elite group of people, within the first few moments of interaction, make your child feel safe and open to learn.
   The first school that we took our son to was a mixed homeschool/Charter school. I will never forget how bad that experience was. I want to clarify that not all Charter Schools are bad. We were just unlucky and picked a bad apple. Out of the three different teachers that worked with him, at that school, he only liked one. The other two just didn't click. I will never forget the stomach churning pain I felt every time that he went. For him, his anxiety was thru the roof. Even the days when he was at home were a horrible down hill struggle. It was right before he was diagnosed. It was thru that horrible experience that I was led to seek an evaluation.
   At the end of his first semester of kindergarten I pulled him out. Never again was I going to sit by and watch my child suffer. My husband and I decided that we weren't going to put him back into a school until we had the results of his evaluation. It ended up taking eight months, (a short amount of time compared to how long some families in this country have to wait for their evaluation). That was from when I first called our local Regional Center, to having the evaluation report in my hand.
  After our last experience, I was terrified to try and find another school. I remember long conversations and many hours spent on the phone. I was stressed and worried about finding the right school. I knew that he wouldn't be able to take very many more bad experiences. If I made a mistake or a misstep my son would never want to go to another school, ever again.
   I will never forget that moment in time when the Special Ed coordinator for our county called me back. I had left a message for her the week before and I was anxiously waiting for her to call back. I was driving down a busy road and it was starting to rain. My phone rang and I recognized the number. I pulled off the road as I answered the call. The kids were too loud and so I stepped out into the rain. Our conversation was not remarkable. I retold my son's story for the hundredth time. She told me that we had to start with our local district, my heart skipped a beat. I wasn't familiar with it and felt apprehensive. The county coordinator gave me the name and number of the Special Education Resource Coordinator for our district.  Not only did she answer, but she wanted us to come to school the next morning. She wanted us to meet with her, the Principal, Vice Principal and the Special Day School Teacher. As soon as I hung up I jumped up and down in the rain. After months of waiting and worry there was hope.
   The following morning we all got up early, so that we would be on time. My son was in full anxiety, meltdown mode. It was very painful to watch and there was nothing that I could do to help him. The school administrators had to see him, even at his worst. The Special Ed teacher walked into the conference room in the middle of the chaos , she never even flinched. My son went with her and my husband to check out the class room. I wrapped up the basic paperwork for a temporary placement and walked over to the class room. I walked in and every one of my senses was met with a pleasing array of colors, soft lights, good smells and comfy quite nooks. He was calm and happy. Some of the first words out of the teacher's mouth were to tell me about her. She freely shared that her daughter has Tourette's Syndrome and that her son had speech delays. She knew what I was feeling and she got it. She was one of the team. Mrs.K was both a Special Ed Teacher and a special needs mom. This was the first time that I knew in my heart that it would be ok, that he would be ok.
  I'm not going to lie, the days, weeks and months following have had their fair share of ups and downs. Thru it all the connection that my son has had with his teacher has only grown and become unbreakable. Mrs.K has held him thru some of his toughest mornings and advocated for his needs. She has even worked hard to help him form a relationship with one of the paraprofessionals. That way when she has to go to a training or conference he can still go to school and feel safe. I try to let his teacher know how thankful that I am,(we are), for her. I'm not sure that words can truly express what I feel.

My son isn't just going to school to fulfill a state requirement. My son is going to school and learning.

Monday, April 13, 2015

An Awkward Mama's Awkward Day

   Today has been... yah. There aren't words really. Let me just say that today was the last two Mondays combined. I am considering spending tomorrow in yoga pants, (Eva Mendes eat your heart out), with my hair in a bun. Hiding out just sounds... nice.
   This is the first day of the kids being back to school from spring break. I woke up feeling very rested, (that in and of its self spells disaster) . First thing I went into the kitchen to start the coffee. Filter in, check. Coffee ground and in said filter, check. Water in reservoir, check. Turn it on nothing. I start to panic... I didn't see the light on. Then I realized the my FINGER was over the light. I should have gone back to bed right then and there.


   The next thing that was, (off?), was my son. I really hate school breaks with a vengeance. I don't think that hate is a strong enough word, actually.   It started out with my son not wanting to go to school. I barely got him dressed and out the door. Then the whole way there I had to talk him down so that he didn't bolt once we got there. He went in and everything ended up being fine. He even volunteered to help serve lunch. His teacher said that he was anxious about there being any changes in their schedule. I think that was what must have set him off. Yet, another fine example of an inability to communicate emotions or fears. It is one of the biggest frustrations that I hear other autism moms talk about. But, ability to talk does not equal an ability to communicate.
   Since, I seemed to have been feeling optimistic this morning I went to Walmart after school drop off. I have been on a new medication. Sometimes it makes me feel loopy and sometimes not. Today it did... Did I mention that it was a Super Walmart? I went into the store and walked in circles. Maybe more like a figure eight? I don't know. What I do know is that I hushed myself out loud for talking out loud. I also bought an Easter Lilly that was marked way down and a Gardenia that I could have lived without. Oh, yes, the only pen that I had in my purse was broken. So, I checked off my list with the insides of my broken pen.

I have a feeling that it would be pretty hard to get kicked out of Walmart. I may have been pushing it though.
  I did manage to get home, unload my stuff and get the kids from school. But, the day wouldn't be complete without having a conversation with a friend where I kept talking when I should have just shut up. I think that I should have had a special social class when I was a kid. Granted, back to my new medication, it has made me more...er ... blunt.
   Long post short, I have a feeling that I might be done adulting for today. The husband came home and grabbed the verbose one then went to CAT to get equipment parts. Once they get back we are going to go out for dinner. My fingers are crossed for a quiet evening... perhaps I can be an adult one last time to get an adult beverage...

Tuesday, March 31, 2015

For The Lost: A Day To Remember

This is an edited repost of a blog entry that was published on November 26, 2014 titled: For The Lost.



   Elopement or wandering is every parents worse nightmare. Every year children and adults with autism lose their lives. There are hundreds more who wander or elope and are later found safe by their loved ones or police. Then there are the ones, the very unlucky ones, who go missing and are never found. The horrible hell that those families go thru. They must live with the knowledge that their child could be dead, harmed, scared... the unthinkable list goes on. Many of these autistic people have medical conditions furthering the urgency of the search.
  When April rolls around everyone begins to talks about Autism awareness and yet there is never a mention of wandering and elopement. I believe that the only way to reduce deaths would be for the public to be aware of the danger. Also, for all of the parents and care givers to know that it is always a possibility and to be prepared. Even if an autistic person hasn't previously wandered there is always a chance for it regardless of age.
   I will give you some statistics. I am sharing these to educate, not to cause fear. 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 of the those were due to elopement. Children with ASD are more likely to be drawn to water.
   Now, 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. I will share with you some examples of elopement. Unfortunately, these are examples from my personal experience. Yes, I cried as I wrote this.
   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 vigilant state 24/7 is exhausting. Not being able to use the bathroom without your child being locked in the bathroom with you. Never showering without them locked in with you, checking at every sound. Hurrying thru a three minute shower in fear that they had managed to figure out how to get out of the bathroom. Constantly living in fear.
   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 or years in between episodes. You may think that you are in the clear. Maybe, just maybe, they have out grown it. You relax your guard a bit. Then you suddenly find yourself running in flip flops trying to catch them before they make it to a busy road. Your heart is in your throat,(not one time has another parent tried to help me stop him). You promise your self to never let your guard down again.
   One of the scariest, (for the parents or care giver), 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. After you get them to calm down, you 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.
   All of the above examples were triggered by sensory overload,(too much noise, people or bright lights), or emotional, (anxiety, fear or being sad). These are just some of many examples. People with Autism process incoming information differently. They can have a slower reaction time to verbal or visual commands. They might be frightened by strangers or the police. Ultimately, my loved one leaves the safe place that he is in not because he is being defiant, naughty, stubborn or malicious. It is much more complex then that. My best defense and only hope is to try and get my son to realize that when he feels that way running will only hurt him.
   

Before you read the end of this I want you to know that little Malik Drummond is still missing four months later. Please, click on the link.

http://www.katv.com/story/28201025/malik-drummond-still-missing-after-3-months

    Maybe, like me, you 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.


If you or someone you know, are in the care of someone who is autistic you can purchase the Big Red Safety box. The National Autism Association, also, has a program where you can get a Big Red Safety Box for free. For more information about wandering and elopement prevention please go to:  http://nationalautismassociation.org/big-red-safety-box/





Saturday, March 21, 2015

This is a little post about World Down Syndrome Day. 


   Up until this last year I had never personally known someone with Down Syndrome. I was raised by a mom who had a passion for special needs adults and children. She passed that on to me along with compassion and acceptance.
  A year ago this last Friday began my first true experience with anyone with down syndrome. It was in the shape of a super sweet little girl. She was kind and compassionate. She helped my son feel at ease in his new school. I will be forever grateful for that. She is now in middle school and no longer at my son's school. Her presence is missed.
    This last fall a new little boy joined my son's class he is almost the same age as my son. When I look at him I see his mom and dad. He looks so much like them. He has an amazing mom who has made herself an expert on Downs Syndrome so that she is able to do what is best for him at all times.
   This little boy I love. No he isn't my kid or related to me. There is something about him that is beyond words. He is smart, kind and so sweet.

He loves my son, so maybe that's apart of my love for him?

   He loves Paw Patrol, dncing and doing the word wall, (he knows every word). Spiders fascinate him. When he used to see me he would point and ask, "what your name?" Now he points and say,"You ,(kid#1), mom!"
   Today is World Down Syndrome Day. Children and adults with Down Syndrome are beautiful and unique. I truly do believe that there is a need in society for everyone. Its our job as a whole to find it. Earlier today I shared a meme on my Facebook page. I think that it sums up exactly what I feel the best.

"Life is the right of every child. Not just a special privilege for the fortunate, the planned and the perfect."

Thursday, March 19, 2015

Full Circle



 I stayed up last night and watched Dancing With the Stars. After Army veteran Noah Galloway danced, I wanted to stand up and cheer.  The judge Carrie Ann Inaba said the very words that rattle me to the core, "You are broadening the scope of what dance looks like."  Yes, yes a million times over YES. Instead of you don't look autistic, say you are redefining what I thought autism looked like. I can't believe that I got to witness that moment of epiphany. Beautiful. 
  My question to you is how do we redefine the world view on autism and all disabilities in such a way that the struggle is both acknowledged and not marginalized. While at the same time opening the eyes of those around them/us see the beauty and potential in that person? Watching the look on her face. That beautiful, "ah, ha" moment. Her world was changed. There needs to be more of that!

#DWTS  #Truth #Autism

Link to a YouTube video of their performance. 

DWTS Season 20 Week 1 - Noah Galloway & Sharna - Cha Cha - Dancing With ...: https://youtu.be/B3KyGXhPrEE



   That is a copy of a post I put on my Facebook page yesterday.  The whole thing got my mind going. One of my fellow blogger Sophie's Mom from On The Train with Sophie told me, "That is what a lot of autistic advocates write about and why I enjoy reading their work- it gives me hope that maybe that is possible." 

    Today, I had my hair appointment. She has been doing my hair for about ten years and has watched my kids grow up. In the process of us chatting my post from yesterday came up. That quickly turned to how she feels about my son.

   I suddenly had a flash back to about a year ago. It was her and me talking. I was telling her about my son's diagnosis.  Her reaction was, wow, I would have never thought. To her he is just him. I remember that I felt like I had to justify my statement.  I quickly pointed out all of his struggles and how hard it was.  I was whining. I completely missed the point of what she was saying. She was saying that my son was him and that was awesome no matter what. Going back to my question, how do we as a society acknowledge and support someone with different needs without marginalizing their struggle?
   There is an elephant in the room when it comes to this subject. It is a big one. One that has to be named before a real discussion can happen. It is autistics against autistic parents.
  On one side is autistics saying that their input as autistic adults is valid and valuable. Really if it were any other disability you would never hear or expect the parents struggle to be apart of the conversation. Or if it was it would be a small part. On the other side is the parents who are saying no you can talk and write so you have no clue what it is like to be my child. There is an automatic assumption that if an autistic adult can advocate, then they are not the same as their child.
   Parents, listen I get it. There is so much that my son struggles with. I don't know what the future holds for him. Some days his struggles look like the tallest mountain that is impossible for him to climb. I, like you, have at times felt like your struggles are being marginalized. You feel like your voice isn't being heard. Also, that all that anyone hears is about what a "blessing" autism is.  That it is all unicorns and rainbows. All the while you are locked in your bathroom so that your child can't hit you again.
  Your struggles are real, the pain you feel is real. There needs to be something done to help you,(us). The reality is that if you took away the autism your child wouldn't suddenly be ok. Your life wouldn't suddenly become , "normal." I'm sorry that you feel like you need to share your nightmare experience with others in order to prove that you aren't crazy. I truly am. It's hard to think rationally when you are sleep deprived and it has been years since you have had a decent night of sleep.

   In my own way, that was what I was doing a year ago to my beautician . I felt like I needed to prove to everyone just how hard I had it.

    What I have concluded is that it is not a helpful or productive path.  It doesn't help you get services or spread, "awareness." It is creating a world that I don't want my kids to grow up in. It is what African Americans fight against, the gay movement and religious rights groups have fought against. Would you expect African Americans, gays or religious people to not be apart of the conversation? NOT including Autistics in the conversation would be unimaginable. Those services, protection and rights? They don't just affect our kid, because they will grow up. They will be the voice for the next generation of children. The voice who will say, yes I can eat where I want, receive medical care, be hired at a job. The voice demanded that all humans be treated... like humans.
   I don't want my son be a victim of a violent crime that gets brushed off because his life has less value. A big organization,(who shall remain name less... hummm kind of like Voldemort... coincidence?),  are the bane of the Neurodiversity movement. They are constantly promoting this idea of autism being an unwanted disease. Once you start down the,"cure" path what are you saying to your child? If there ever were to be a, "cure," it wouldn't help you right now anyway. Ultimately, how are you expect to get real help for someone society deems unworthy of the help?
   I am asking you for something big. Please, take a step back. For those around us to truly be able to see the beauty and potential in our children we must first see it and embrace it. Then we must turn to the law makers and leaders of this country as a united front and demand the tools and services that we need to be successful. As we quickly approach April, instead of lighting it up blue let us embrace the beautiful diversity that surrounds us. Autism is a spectrum I choose to accept and respect every shade.

Graphic From My Friend at: A Legion for Liam! Follow them A Legion For Liam at https://www.facebook.com/ALegionForLiam

Tuesday, March 10, 2015

Words Set Free

   I have written, deleted, thought,written more... copied, pasted... then deleted again. I have been fighting an internal battle of words and thoughts. I don't know what to write and what to keep private, to myself. My already thin filter has been worn out. Which means that you are going to get a very honest me. Yes my blog is an autism blog but it is also about our whole family. I also know that there is a very high percentage of autism moms/autistics, (ones who are both), who are living with autoimmune diseases, cancer, mitochondrial diseases, diabetes and others that I can't bring to mind. How do you live in a constant state of unknown? Life goes on even if you aren't able to.  
   I seem to get the same questions asked over and over, but with different words. I am tired, scared, and I am hating my body. I have thought about making a helpful list that might help you if you are in my situation. I am a list person. I am always making lists. Sometimes my lists have sub lists. 

But... I deleted them too.

My thoughts are only partially formed. Like a bubble, they burst before they have even left the wand.

Disappointment: the feeling of sadness or displeasure caused by the nonfulfillment of one's hopes or expectations.
  
   The last eight months have been filled with one disappointment after another. I don't know when or how it will end. I have found that I will have one or two good days surrounded by a whole lot of bad ones. Lately, every day tasks like standing and making dinner has been a challenge. I am realizing that I may never be able to name my foe. Living with a rare and unnamed disease is... it's uncharted land and no one can give you an answer. Somehow, I keep thinking that knowing what it is might help me feel better. At this point I think that it is more of a dilution. Or it could be my carrot to keep me going even when its hard. Maybe just one more...blood draw, MRI, biopsy, or other torturous test. Then I can be fixed? 
   I think that I am ready to let the words go. So many in my head, its getting crowded. Writing frees my thoughts from the prison that is my brain.
   I will always be grateful for all of the kind friends that have been there for me. The calls, texts and messages. They have been the sun shining through my cloud filled sky. The understanding words from others are rare treasures. I want to end this with a quote, one of my favorites...

For all of us who have dragons to slay.
 
"Fairy tales are more
than true; not
because they tell us
 that dragons exist,
but because they tell us that
 dragons can be beaten."
                                       ~G.K Chesterton





Tuesday, February 24, 2015

Random Kindness

   I have been thinking lately about a time that someone has reached out and randomly shown me or my kids kindness. To be clear, my close friends and family has always been supportive. Outside of that protective bubble however, I realized that, I don't have much experience with this. Most of my almost seven years of mommy experience has been laced with unkind words, stares, mean words whispered behind my back and some said to my face. I could count on both hand those few times. I have been made to feel like a failure as a mom, far more often than as a success.
  To spite this, not all too long ago something special happened. I was at church with my kids and someone that I don't know very well walked up to me and told me that my kids were so well behaved. She went on to say that she knows how hard that it is. My jaw about hit the floor. I mumbled a surprised thank you. Such a simple act. It made the rest of my day and I felt like I was on cloud nine.
  Afterwards as I thought about it I realized how revolutionary it would be if we all said something. Far too often complete strangers feel that it's ok to voice negative comments. What would the world be like if people were equally vocal about the positive things?
  The week following my random praise I was at a large grocery store. Think high ceilings, bright lights, lot of people and echoing noises. The lines were long at check out. In the line next to me was a mom. She had three kids under five. One was in a carrier strapped on the front of her. She was unloading a full cart while she talked her middle kid down from a meltdown.  I could tell by the,(oh too familiar), lack of eye contact that she expected someone to say something rude. Instead I silently watched as she used kind words towards her children. I was amazed by her. I quickly bagged my stuff and before I left I gently touched her arm and told her how impressed I was with her kids and what a good mom she was. In that fleeting moment I was able to pass on the kindness that was shown to me.
    That will bring us to Glinda. The lesson that I learned from those two experiences was that, I was not powerless, (Glinda would have been proud). Instead of just complaining about the mean looks and words, I have the power to start spreading kindness. We have the power to change the world around us. It doesn't have to be a big gesture and it doesn't cost a thing. A well placed kind word can change a day for the better just as much as a unkind word can for the worst. Go, ahead and give it a try. Besides the world needs more Dorothys and less Wicked Witches.

Wednesday, February 18, 2015

The Ghost of Bullies Past

   Memories are funny. The smallest things can trigger them. Sometimes the memory is still so fresh that it seems like yesterday....
   This morning in the hustle and bustle of getting out the door, something triggered a memory for my son. We had just turned down the school road. It was a beautiful morning. My son's voice rang out clearly from the back seat. He slowly and carefully enunciated each syllable. My stomach suddenly in knots, my head hurt. My heart hurt.
  Last fall, August of 2014, there was a new student in my son's special day class. He seemed nice but there was something.  I couldn't put my finger on it. You know that mama gut feeling?
   It was about a month or so in to the semester. My son became agitated. He would come home from school scripting words that he had never used. They were mean, aggressive words. I tried to get out of him where he heard them. I told his teacher and she was on the alert too. He started running again.  His progress stopped. He went backwards. I was worried. No, I was terrified.
   As I worked on getting the information from him at home, his teacher was working on him at school too.  Finally we were able to get that the new student was whispering horrible things to my son as he walked by. The other boy was doing it to everyone. My son was the only one who stood up to him. Slowly the bully became focused on my son. The more that the school tried to protect and correct the worse it got.
  School, a place that should be safe, had been turned into a war zone. Every day I could feel the tension build. I felt like I had stepped out of my body. I was watching someone else's life. I've heard it talked about on the news. I have read about other's experiences.This wasn't cut and dry like I imagined it would be. A little boy who has a disability, he had to have been treated like this by someone else?  That boy was hurting.  He was passing on the pain to someone else. I found myself both heartbroken for the bully and protective of my son.  If his abuse came from his home who would protect him?
   As much as I cried and prayed it got worse. Then one day it happens, the final straw. This other boy threatened to kill my son, in front of several aids and a teacher. The other boy was suspended and his parents pulled him out of my son's school. He never came back. I'm not sure what has happened to him. I pray that he is safe and gets help.
  The last day that the other boy was sent home early my son's mood had done a complete turn around. My son began to return to his normal happy self. Every day I could see him grow and heal.
   What happened this morning is why I am writing this. As we turned into the school road from the backseat came the name of that other boy. My son was talking about him being a mean boy. And that he didn't play with him. When the mean boy talked to him he would tell a teacher. He said yesterday... my heart sank even deeper.  Something that happened months ago felt like yesterday to him. His memory so fresh still. When we got to school I reminded him that the boy isn't there anymore. That he didn't have to worry, he is safe now.
  As I gave my son's teacher a good morning hug I whispered into her ear what he had been talking about. So, that she was forewarned. I wasn't sure if he was going to bring it up to her.
  When I drove away from school I realized that it was time to write about it. I couldn't at first. In fact many of my close friends and family never knew. I want to share it now in hopes that if you ever find your child, even non verbally seems out of sorts, please find out why. My son lived a nightmare for about a month before we put all of the pieces together. They say that time heals all wounds. I hope that they are right. For our family it has only just begun.

Monday, February 2, 2015

The Year of Change

  We are quickly approaching the one year anniversary of my son's diagnosis. This has been a busy year filled with change and learning. I think that out of our little family, I may have been the one who changed and learned the most. Some of these lesson have been painful. I want to share some of it with you. Hopefully you can learn from my mistakes. Or at least find comfort knowing that you aren't alone. Because you need to...

1. Be kind to your self
Yes, I did think at a year old that my son could have been autistic. Instead he was almost six when he was diagnosed. Making him ineligible for all of the early childhood interventions. I have felt way too much guilt over it. I have had to let it go. The only thing that the guilt was doing was sapping my, much needed, energy from the here and now. I did the best that I could with what I knew. That my friends is the only thing that we can do.

This leads us to...

2. Listen to your gut
I can't stress this enough. I have learned this the hard way. If you feel that there is something up with your child then push for an evaluation. The worst case is that you can be wrong. Best case is that you are saving everyone from unnecessary misery. You bypass number one. It is a win/win. There will be times that you will be the unpopular voice. Everyone may doubt you. The fact is that we as the parent some times pick up on stuff that no one else may see. The last piece that led me to seek an evaluation for my son was another bloggers journey. I found my self saying far too often, "wow her daughter is just like my son and she is autistic."

 3. You are your child's best advocate
If you see your child struggling speak up. If you see a big change in behavior find out why. Don't be afraid to ask questions. They need you to. Many of our children have a hard time communicating with words. You have to become a professional at under standing their form of communication. Verbal and non verbal. I always think of Grover from Sesame Street, " I will unleash my powers of observation!" Be quiet and watch. They will tell you what is wrong even if it isn't with words.

4.You are not alone
One wonderful thing about the internet is that you are able to connect to a whole world of people who have been there done that. No judgment, no questions just love and acceptance. If you look and are patient you will find your tribe. I had spent six years of not knowing why. I was doing everything right. Why was my son so different? Why was our family so different? It turned out we/he isn't/weren't I was just looking in the wrong place.

5.The Golden Rule is not for the weak
Treating others the way that you want to be treated includes folks with a different opinion. That includes on the internet. Yes, you have arrived at your opinion thru research and careful thought.That doesn't mean that people with opposing views haven't gone thru the same means to form their opinion. I am not saying that there aren't absolute truths. What I am saying is that the other person deserves respect just like you. Walk away if necessary. If you don't want people using hurtful words towards you, then don't use hurtful words towards others.

This is a big one, so hear me out...

6. Autism is not the worst that could happen
My initial response to my son's diagnoses was, what can I do to fix him? After spending time reading the writings of adults with autism and families living with autism, my paradigm has shifted.  I realized that he is who he is and it is ok. He isn't broken. He just needed new ways to navigate the world around him. I am always telling my children that everyone is different and that it is good. I want to be very clear. If your child needs speech therapy, get them into speech therapy. If they need help to learn how to deal with sensory overload, then get them occupational therapy. Yes you should help them be the best them that they can be. Just like you would do with any child. Autism, however, is not an affliction.

   Yesterday I was told how much my son's classmate with loves my son. I was told that it is because my son is always kind to him. Of all of his accomplishments the kindness and love in his heart, I am the most proud of. When I was pregnant with my son my husband and I used to talk. We decided that out of all of our hopes and dreams for him, there were two things that were supreme.  They were that he would always know that we love him unconditionally and the other was that he would be able to love others.  I feel like in its own way things have gone full circle.  How can that apply to you?

7. No matter the path the goal is still the same
You may have just been told that your child is autistic. Maybe you are a year in like me. Or you may be the seasoned, warrior mom who is smiling at my naivety. Who ever you are and where ever you are on your journey. My goals,(yours, ours), as a mom don't change the second I got the diagnosis. I still want the same things for my son. The path has just changed.

Thursday, January 22, 2015

Mutual Respect

This post is dedicated to all of the moms that I may not see eye to eye with...


   There are a few topics that you will never see me debate on my blog. One of them is vaccines. It's not because I'm afraid to tackle the hard topics. It's because I am afraid of something that I may say silently hurting you.
   I realize that I have touched on this before. But, today and several times over the past few days I have seen friends get hurt over someone else's blind quest to be right. I feel like I need to clarify some stuff. Both in my own thoughts and publically out of love for them, my fellow moms. Although I will be talking about vaccines, you can apply it to anything. You know, the triggers... breast feeding, natural births, cloth diapers... I think that you get what I am saying.
  Okay, back to vaccines. The one reality about vaccines, the one that we can all agree on, is that people who don't vaccinate do it out of love for their kids. People that do vaccinate, again, it is out of love for their kids. I am not saying that it should be swept under the rug or that it shouldn't be debated. What I am saying is that what we should NEVER do is attack people. Ever. Period. Once you cross the line and start using words like "ignorant" and "uneducated" you have lost. They have lost, everyone loses.
   This morning I didn't jump in where I should have the way that I should have. Some really kind and loving people got hurt. I have been in the reverse roll. I have had to physically walk away from conversations because they were ripping into people who vaccinate and have hospital births. Guess what? It hurt, it still does hurt. At some point we, as a society, have crossed over into a place where there are different groups of parents that sit around slinging preverbal poo at each other.  It has to stop one conversation at a time.
  The TV news outlets are known for their fear mongering. It's funny how, as humans, it seems okay if it is in line with our own beliefs. I am guilty too. Right now they are using an outbreak of Measles at Disneyland as a way to divide us. Instead we need to be focused on what has brought us together to begin with, our children. In my particular situation, my autistic child. We must approach each other with the same level of respect that we would like in return. We are all doing the best that we can with what we have. Let us join together, to create a better world for those generations who will follow.

Friday, January 16, 2015

A Letter To Me

  Tomorrow is my birthday. That has caused me to ponder my last year of life. It has been quite the ride. Instead of the analogy of a winding road with twists and turns. I will use a theme park roller coaster, that fits a whole lot better. Just as you are settling in you drop one hundred feet turn upside down and then get splashed with water. Yep,that would be the last twelve months. On this day last year I was with my husband and kids on our first big family trip. We were visiting my husband's family in southern Missouri. My husband's sweet Aunt was playing tour guide. We spent the day in beautiful northern Arkansas, in a cave.  If I were to write my twelve month younger self a letter this would be what I would say...
  I know that you are having a wonderful trip with your family, but, it is over shadowed by your sons autism evaluation that will be three days after you get home. You are scared and trying to be the best mom that you can be. Yes, your fears will be confirmed and it will be worse than you expected. What you will find out is that what you feared isn't really what you thought that it is. All of the tears, phone calls, and prayers will be answered. He will be ok and so will you. During the next year you will make friendships with people who get it. You won't be so lonely.
   I know that you are worried about getting into a house and getting a car. Both turn out better then you could have ever dreamed. You get a nice house in a good neighborhood and you get a new car. Yes I know that you don't believe me but its true.
   This next part is going to be hard. But, hear me out. You shut down when you are overwhelmed. Yes I know that you think that you are so good at dealing with your emotions but, you suck. I mean at some point this year you will loose it with both your mom and your husband. You would be better off learning that its ok to not be perfect and to not be ok. The people that love you will still be there when you dry your tears and get back up off the floor.
   I think at this point you have read between the lines. Do you remember that funny gut feeling when you were picking out health insurance? Good job for listening. Two weeks before it takes effect you will realize that the endometrial polyps are back and you will have to have another surgery. This time you will have to give up forever your dream of having another kid. You will quietly shed tears as you learn about your friends getting pregnant. You will heal physically and mentally. It really was the best choice.
  You will, in March, start spending some of your time and a lot of your effort to loose weight and get healthy. Just when things are settling in the rug is going to be pulled out from under your feet. It will hurt. You will be scared in ways you never thought were possible. Words like autonomic, orthostatic and neuropathy will become a normal part of your vocabulary. Enjoy the way you feel. Ground yourself in your prayers and know that even though God might allow you to go thru the valley of the shadow of death you won't be alone. Every time that you think that all hope is lost, you will get the hope that you need to make it thru.
   You will end this year with many things un resolved and you will be facing your daughter having hearing problems and a progressing neurological disorder. To be honest I don't know how it ends.
  There were some good things that come from this year. I want you to hold on tight to this. It will help you when your heart is broken. Your husband will knock your socks off. He will exceed your expectations and you will have a renewed trust in him. He will be by your side and help you thru, don't forget to ask. No, he can't read your mind yet.
  You WILL grieve. After you have cried and been in a low funk you will put on your butt kicking boots and fight. I am writing this letter to you maybe a bit too late to help you, my 32 year old self. As I travel thru this next year I will pull this out from time to time. It will remind me of were I've been and how far I have come. I will end this with another good piece of advice that my sister gave me the day that I married my husband. She told me to enjoy and remember the good times. Those memories are what help you get thru the hard times.  Here is to another year of life. May the memory of this happy day get me thru the hard times to come.

Wednesday, January 7, 2015

Why I Don't Carry Coffee At Drop Off

   Today I thankfully saw it coming before it happened. I even, for a moment, thought of being one of those mom's sauntering on into my sons class with a cup of hot coffee in my hand. But, I know better. Yesterday went well so I was on my guard.
   As I pulled up and parked I heard the change in my sons voice as he said, "I don't want to eat in there!" He was talking about the cafeteria. Before we left he had decided to get a hot lunch. Pulling in he saw all of the kids in front of school and anxiety hit like a fright train. I quickly got them out and went as fast as I could, while I gently squeezed his hand. He was mumbling undiscernible words as we got closer. Then about ten feet from the door he dropped, dead weight. I quickened my steps pulling him as I went. I tossed my keys and his backpack on the ground so that I grab the door handle and got him inside where my back up was.
  When he is feeling this way the only thing that helps is time and a firm rocking motion. Gently, but firmly holding him and rocking him seems to reset his brain. I once heard that firm hugs release dopamine and oxytocin in your brain. If I am able to catch it soon enough then the result is almost instant. My husband and I have talked countless times about medication for his anxiety . I think at this point we want to continue to try and help him work on controlling it on his own.  
  Today as we were inside and I knew that he was safe from the parking lot and the road. I dropped to the ground gently rocking him and talking to him. He began to relax and calm down. I told him that I will bring him lunch and that it would be ok. He calmed enough to get up and interact with the teacher. Then he changed his mind and tried to run again. My hand was already still on him so, he only got an inch. The aid that he loved is learning how to work with him during his high anxiety times and she is learning from the best. In the past I have watched his teacher with him. she gently holds him and tells him that she can't let him go because she wants to keep him safe.
   I can say without one ounce of doubt, that I hate the fear that I have, as his mom,knowing that there could be a day that he gets away. When he is in that fight or flight frame of mind he can't think or reason. I pray every day for his safety. Every time I hear of  yet another child, teen or adult who has wandered and died my heart breaks just a little bit more. I know that it could be my son.
   The last I checked he was doing good. I did bring him a lunch and left it in the office. I know that when I pick him up this afternoon he will be happy and probably not want to leave. But, there is tomorrow that I have to worry about. So, in the morning I will ware my running shoes instead of flip flops just in case. My coffee? Yeah that will stay in my car.