Under the Rubble

Dedicated to all parents in the autism / special needs trenches battling for help for their child.  May you all be heard when you cry.

Under the Rubble

Piles and piles of concrete, debris and dust cover you and your child and you can't move.  You can't see.  You feel a tremendous weight all around you.  You can't do anymore than just yell as loud as you can for help.  You can't move enough to help save your child.  You can't see well enough to know if they're ok. 

You hear rescuers walking all around the rubble.  You hear equipment, you see glimmers of light shifting around moving debris.  You know they're out there! People that can help you!  People that can save you and make a difference.

You yell and yell and yell and do everything you can to be heard.  You make yourself as loud as you can for the sake of helping your child.  Surely they'll stop moving about their jobs long enough to listen for you.  Surely after a while they'll realize that they had to listen in order to know where your cries are coming from?  Surely, if they hear you they will choose the right tools to save both of you?

Now the weight becomes heavier all around your child.  They've still not heard even one scream.  If they'd just listen you could direct them to your child.  You could tell them what they've got to see in order to help you.  They've worked hard and used so many tools but until they stop and listen they will never find your child.

Wait....you stop yelling to listen.  It's quiet now.  You rejoice in your heart because that means they are trying to listen for your voice!  You yell again with all your strength.  Nothing.  No more noise, no more tools, no talking.....and no more listening.  They've given up.  They think they've done their job.  Through a tiny crevice you can see them gathering.  You can hear them discussing how hard they worked and what good they did for the other people pulled from the rubble. 

The tools have been packed up, the rescuers have gone home to their families.  You and your child are still here trapped under the rubble to deep to be heard. 

If you are in a position to listen.....really listen.....to a special needs parent, be sure you listen with all your heart and use  the  tools that they suggest.  Their instructions may not make sense to you, but it is they who are trapped and only they know which direction they can move.

Don't leave it to someone else.... You may be the only rescuer that heard their cries.

Fight or Flight

Fight or Flight

Quite some time has passed since my last blog entry.  In fact, quite some time has passed since I felt compelled to ramble on for months on end and publish the deepest depths of unbelievable experiences in my book "Autism & Assholes".

I spent a huge amount of time in the last year or so feeling that dreaded emotion, guilt, that I'm sure every parent of a special needs child feels every time they vent, blow off steam or just plain blow a gasket. " I sound so angry", I thought! " It really just sounds like I'm an old bitter woman" I thought.  I've continued through each day mutt-ling through desperately trying to conjure up nothing but positive emotions, positive reactions, and understanding thoughts with regard to all my son and my entire family has encountered.  

 I felt the need everyday to recalculate experiences. I frantically searched for all the good things that others have brought about for my son.   Sure, people were still ignorant around my son on a daily basis.  Yes, I still dealt with teachers and staff that refuse to follow the ARD or even present a plan that fit within my sons reach.  Of course there were days that I saw no hope at all for positive behavior ever interacting with my child.  Still I kept about thinking, "It's all in my attitude".  

I did pretty well at this until May of last year. 

My husband, myself and my special needs child (for those of you that haven't read the book, he is now 16, is totally blind from birth, and non-verbal low functioning autism) all went on a family vacation to visit our other son who is currently serving proudly in the United States Military.  

If you have a special needs child, particularly a severely autistic child, you know that the idea of traveling away from home, going to new places and following a very different routine is terribly unsettling and normally just not even possible.  Needless to say, for us, flying was not an option.  So off we went in a minivan from the great state of Texas to the West Coast for some sun, surf and a visit with another one of our sons. 

Ups and downs happened all along the way and my son tried his best to be as brave as he could encountering all of the "new".  Alas we arrive, settle in to a hotel room, go through the normal routines of learning the layout and accepting the meltdowns as they came.  All in all, however, the meltdowns were slighter than we imagined they would be and my husband and I felt liberated to be out of the house, much less out of state!  Hurray!  We were really doing this!  

One attempt after another to find outings that suited the whole families needs, some successful and some definitively NOT.  Remember...I still had strapped on my handy dandy positive attitude and my understanding of ignorance helmet.  

All of this attempt to stay positive  came to a crashing halt the day we decided to take my son to the beach.  After all, water is his absolute favorite thing in the world!  Back home we go to the beach as often as we can and he always has a terrific time.  Change number one hit my son like a ton of bricks when out of his normal wheel chair he came as we attempted to lead him to the water after our long walk from the car to the beach.  We had carried everything with us that he would need so needless to say our arms were a little overloaded.  My son encountered the deep sand of a west coast beach and immediately froze.  No big deal.  I went to park our things in a nearby spot and my husband just picked my son up to get him to the water's edge.  Once we got to the water we new all stress would dissapear from his face and he'd be free to enjoy some time in the waves.  

Sounds simple right?

What I got was far from simple from that point forward and what my son got was just plain horrific.  I noticed out of the corner of my eye as I laid our belongings down on a spot near another family, that a group of surfers were headed my direction from the water.   Well that's nothing strange considering I was on a beach.  It got strange, however, when one of them separated from the rest and walked toward me beginning to yell things I couldn't quite make out.  "Wow" I thought, "There must be someone behind me that this boy is mad at", I thought.  I looked but no one was there that seemed to be his target.  As he approached all I saw was an enraged expression on a fast walking surfer with a board that he then flung at me .  Thankfully the board didn't hit me but it would've been, I think, an easier injury than what came next.  Now, unfortunately, I could hear what he was saying.  I proceeded to be completely stunned as he continued further towards me ranting at the top of his lungs about my son.  "We don't want him here" , "No one wants him here" he said.  

So this is when I must've been still trying a bit of positive thinking and I assumed that he must've misunderstood my son and thought he was a young person that had had too much to drink.  "I'm sure that's what it is" I thought but still feeling like it still was horrible that this boy was attacking me.  I tried to get a few words in to explain that my son is autistic and blind and that's when the horror struck.  He knew!  He knew my son was physically and mentally disabled.  He wasn't perceiving things wrong or coming to the wrong conclusion!  Here in 2015, in the most (supposedly) politically correct , be nice to everyone state there was a boy screaming vile profane statements about my son and his lack of welcome on that particular beach.  In fact, I was informed very loudly with many unrepeatable words how disgusting my husband and I were for bringing him in public at all anywhere!  

Now to those who know me or have read my book you're probably thinking "Im sure she killed him dead and now she's writing this from her Jail cell".  Nope.....the exact oposite happened.  I broke.  I lost the ability to even function.  I became a trembling, sobbing mess that could barely speak.  The shock was so severe I could not even gather a response.  To this day almost two years past the even I still feel horrible guilt for how weak and emotional I became.  Hence the amount of time that has passed between the event, and my blog about the event. 

This is when I had a brief chance to gain a few feet of distance between this disgraceful human being to yell for my husband who had almost made it to the water's edge with my son.  His face immediately dropped open in shock when he realized what was happening.  Naturally he could not set my son down and leave him to run to my aid so here he came carrying my 16 year old 100 pound son back up the sandy slope to rescue me from what he thought was just a lot of yelling.  

When he got close enough to hear his pace picked up immediately.  I thought for sure this brazeness that the boy must be feeling would wane at the sight of my 6ft 2 husband and my son.  Nope.  This didn't stop him either.  Instead he did the unthinkable and proceeded to continue his vulgar attack but this time he directed it at my son.  

So if you retrace you'll remember we have a ton of stuff with us, plus a wheel chair, and are forced to carry my son.  The sand is deep everywhere so you can't get anywhere quickly as your feet sink 6" everytime you take a step.  That would've been fun if we weren't trying to escape.  

As the attack went on and my husband felt helpless to shelter my son from this boys words and decibal level, I looked around thinking "why isn't anyone helping us?".  We needed help.  So I looked at the man and women sitting behind me by about 15 feet and said "can you help my husband please?"  To this his wife replied to him "honey don't talk to her, you don't know what's going on".  

I was astounded.  Not only at this point was the yelling still going full force but no one around us would even try to intervene or even offer to help us carry things so we could leave faster.  

My son is now in full blown meltdown of the worst kind.  All of this on my husbands back.  

Finally after about 5 minutes but felt like hours a woman walked by yelling "I'll get the life guard".  

Normally I would've had a snappy come back for all of these people or just taken the kids out myself with a stiff right hook, Nothing.  I could do nothing.

My husband and I continued to try and walk toward the exit as finally the couple I had asked for help told us "oh don't let that ruin your day, just stay anyway".  I cried uncontrolably when I spoke "you don't understand, he won't calm down from this.  We have no choice but to go."  But....that ofcourse is something only the parent of a severely autistic child would understand.  Instead of consideration or God forbid, help of any kind, we were now not only the object of a direct verbal and almost physical assault, but also under the intense scrutiny of other beach goers firmly believing that we were unreasonable not to just stay and enjoy the day anyway.  WE were now the ridiculous ones?  Yes, that's what they believed.

After a few more moments of what I can only assume were pangs of guilt, the husband of the woman behind us that didn't want him helping us got up and proceeded to help me up the slope with all of our things and my husband was able to begin a quick retreat with my son over his shoulder up the hill to our vehicle.  Of course, after my son and I were safely in the car, he made his way quickly back down the beach for what I was sure was going to be a brawl that left me stranded in a foreign state with not enough money to bail him out of jail.

Thankfully when my husband arrived back down the hill at the beach the life guards had finally gathered near the person that had attacked us.  But what he found was NOT a lifeguard calling the police, was NOT lifeguards expelling this person from the beach.  NO, in fact everyone was gathered in what seemed like a cluster of disorganized staring at the person that had committed this atrocity.  NO ONE was doing anything!  My husband demanded that the police be called to which the lifeguard stated, "we don't have that capability".  In other words, had my husband just given up and left, nothing would occur.  NOTHING.  My husband insisted and the police were called. 

The lifeguards at this point were acting only because they had been backed into a corner.  The offending person was still standing there for the duration of this exchange and continued his vulgar attacks to my husband and now the lifeguards as well.  Only when he felt the police might actually arrive soon did he remove himself from the beach and start the trek up the hill on foot with his board .  Did I mention that the large group of surfers with him did nothing to stop their co-surfers behavior?  It was clear that they did not agree with his attack, but again, nothing was done.

So after about 20 minutes the police arrived and assured my husband and the lifeguards that they would "look" for this person.  My husband rejoined me and my "in full meltdown" recovery son in our vehicle and we left the parking area.  On our way out we saw the person as he was walking up a neighboring hill in plain view of all of the police.  Ok, NOW I was mad.  They didn't even try!  They did nothing to actually look for him or proceed so that this person could face any consequences at all.  My husband drove back to the police car and said "there he is!  He's walking up that hill right there!"  We were met with this response "oh, ok, I'll look into that". 

After parking our vehicle again and watching, we saw no "looking into that".  No attempt was made at all.

After settling my son, we headed back to our hotel room and replaced a day at the beach for a quiet soak in a spa.  Why?  Because no one cared about my sons rights as a human being.  Him being attacked was somehow less important than someone else.  Because to the "untrained" "uneducated" eye we could've just ignored this person and gone about our day It was deemed unimportant and we were labeled "ridiculous". 

No amount of positive thinking therapy could change the switch that was flipped back to the "on position" in my head.  I've learned something since this event.  I've learned that God gave me my son to care for BECASUE I have the spirit of a fighter, BECAUSE I don't shut up when inequalities and unfairnesses occur.  I was given this child; I was ENTRUSTED with this child BECAUSE God new I WOULD fight for him no matter what the cost.  I let God, my son, and myself down that day.  I allowed fear, sadness and the illusion of political correctness to beat me.  For that my son suffered. 

So onward and upward with my senses reawakened and my fighting spirit restored.....I move on for the next battle to protect my sons rights to exist in this world in peace.  If I had never let my guard down; if I had not been "guilted into" trying to be more passive or positive, I would've stopped this altercation before it could've ever affected my son.

 The guilt that once consumed me for writing my book "Autism & Assholes" is now gone forever.  The guilt for being a constant source of vinegar in a world that thinks honey is easier to manipulate.... also gone.  Those days are over and I will never again, for my sons sake, be fooled into believing that fighting for my child's rights makes me a negative bitter person.    It makes me a Guardian; and that I shall stay forever.

I am a "special needs parent".  I don't have the luxury of being passive.