It's because you're like Job

It's because you're just like "Job"

Why do people feel they HAVE to have an uplifting remark every time they see me or my son.  It seems there are 3 groups of people in this world as it relates to the special needs community....

There's the  group that just interacts with everyone they meet as needs and life direct with no agenda  whatsoever.  (I like these guys the best)  no fuss, no frills....just life .

There's the "A hole" that I wrote an entire book about that doesn't realize how inconsiderate and ignorant his behavior or comments are.

...and there's the well meaning, well intended do gooder that always feels that they HAVE to say something encouraging.  It's like that one person you know that has an inspirational quote for everything and you can't be around them without being assaulted by uplifting philosophy...

....we're  going to talk about the last one for a minute....

OK, here's the disclaimer...I am a Christian myself.... never said a good one; just said I am one.  But this fellow Christian nonsense of comparing parents of special needs children to Job needs to go the way of the Buffalo.

Stop it!  No I'm not! and especially NO MY CHILD IS NOT!

If you tell me that I'm just like Job from the Bible, you've just told me and my son that he's just a tragic event that has happened to me to test my resolve for God.

Is he not his own individual in God's care?  Should we really be likening human beings caring for one another to this story any longer?  Does my son deserve to hear blatantly in front of his face that he has been selected as a means to torment his family?  That his very existence is the definition of torment and struggles? That he is likened to the boils that afflicted Job?

 Please people, stop this insanity.

Oh please....who is this helping?

Sure,. tell me the story of Job when my house burns down, when my husband loses his job, when I get cancer or when a tornado sweeps away my crops..  or heck even when I run out of chocolate ice cream.

But don't, no matter how well meaning you are, walk up to me thinking you have the love of God in your heart tell me in the presence of my son how I should use the difficulty of "having to care for a child like this" to prove how God has helped me overcome such tragedy.

So many things can be said, not said, or done when you feel awkward or desperate to help rather than this.  Instead of struggling awkwardly to figure out what to say or a story to tell,  realize that WE DO NOT NEED YOU TO SAY ANYTHING AT ALL.  Consider that the person you've just "likened" to Job, may actually use this experience as a reason to shy away from Christianity.  They might even be led to think  that you are suggesting that God Punished their child intentionally.  Who in their right mind would go nearer to a crowd of people subscribing to that theory?

I don't know any parent in my circles that views their child as a burden.  The burden is being exposed to people that say and think stupid stuff!

Don't teach people that they should see their child as a tragedy handed down as a trial from God.  Our children are blessings from God....not persecutions that God allowed Satan to hand out as tests.

If I can leave any Christians with a new thought it would be this....don't alienate the group of people that need your support and inclusion more than any other.

You don't realize how lonely we are, how excluded we are.  In fact, most of the time while you are ministering to us the "reasons that God has allowed this tragedy in our lives" you're forgetting that we can't even attend a church to hear the full story because you lack a place for our children in your sanctuary or Sunday school.

Can we take a deeper look at how we encourage people?

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.









 

 

Autism And Assholes read the book intro

Introduction to Marie Duke's book "Autism And Assholes"

Maybe you’re reading this book because you’re autistic to one degree or another and you do not like assholes!

Maybe you’re reading this book because a family member of yours is raising a child that has a physical disability,  autism, or both and you want to help or somehow begin to understand how they sometimes may feel while raising this child.

Maybe you’re reading this book because you’re a person with a child that was recently diagnosed with some form of autism or disability or both.

Maybe you thought you bought a book about raising donkeys and now you feel really stupid! (This book will be of no help to you.  Just walk away.)

Or, maybe you’re a mom, just like me, that’s been raising an autistic or otherwise special needs child for quite some time and you realize that your child’s disability is not the difficulty you face, but actually all the assholes you encounter along the way. Maybe you’ll understand somehow that I am not an “asshole” myself, but just a person willing to publicly blurt out some truths about how it REALLY feels.

I like to be truthful, I prefer to be blunt, and I love to laugh at pretty much everything. This book is a combination of all of these.  If you can’t handle a blunt comment, take a joke, or laugh at yourself, you might want to put this book down and go back to your knitting or needle point so you are not needlessly upset and tempted to show up at my house with a pile of toilet paper and eggs.

I am not writing to offend, nor worry if I do offend.  I am not writing to criticize or harm.  I am just writing truths and opinions about my own life, my own experiences, and my own feelings concerning caring for my son.  There are a lot of feelings and thoughts as a mother of a disabled child that go un-expressed in the interest of preserving sanity, keeping family peace, maintaining friendships, being allowed back into department stores, or just plain staying out of jail!  The basis of this book, although some will undoubtedly believe it is to rant, is raw experience and feelings in real life for real people dealing with something most people just do not understand.  This is not an informative compilation about the challenges of a specific disease or disability. This, however the reader chooses to perceive it, is meant to unveil some truths about those challenges that do bog down, hurt and cause discomfort and hardship.

Assholes definitely qualify as the biggest challenge of them all! (giggle)  You may luck out reading this book and find you have nothing in common with anything I have said.  You may however find that you also have such “assholes” lurking in your midst; maybe even in your own family.

Can I change the face of autism or disabilities with this book?  No.  No again, and Hell no!  Can you leave this book lying around for the last ignorant person in your life to read after you’ve left the room in hopes that they might STOP BEING AN ASSHOLE?  Yes!  I believe so!

Perhaps all that will come from any of my words is the mere understanding that you are not alone.  Perhaps I am writing this text just to discover that fact myself!

Anyhow, enough with the disclaimers, explanations and attempts at law suit prevention.  I will not spend the duration of this book wasting my own thoughts and yours with polite innuendo and socially comfortable terms.  Right or wrong, rude or polite, I hope you get a good laugh, an understanding cry, or at the very least a good fart out of some of this!

The following is a true story, but the identities and names have been left out to protect all the assholes.


Autism And Assholes      by Marie Duke

 

Day 46 in Captivity

Day 46 in Captivity

"Woooohooo!  Summer vacation is here!"  said absolutely everyone in the school as my son and I walked out the door on the last day of school to load ourselves up in the truck and head home for the beginning of the summer break.  All I could think as I headed out the door was "God please let this summer be different".  Upon bidding us farewell until next year, one well meaning teacher asked "So what are your big plans for the summer?  Any big trips?  Anything exciting?".  The other "more well-meaning teacher" standing directly beside her quickly nudged her into silence as my son and I left the school contemplating her remarks.

My son is non-verbal, completely blind from birth, and severely autistic.  He may not have been able to tell me, but I know him and his facial expression said "what did she mean travel? exciting? big plans?.....what are you and Dad planning to do to me that I know I will already hate?"

I, on the other hand,  am very verbal, and unfortunately can see far too well to ignore all of the ignorance in the world so my thoughts were, "Who does this special needs teacher think she is rubbing my "non-adventurous / non-vacation" summer in my face?"

Sensitive much?  Yes............VERY!  You don't have to tell me that my emotional response to that comment was an over reaction.  You don't have to remind me that this was simply a staff member attempting to be supportive and communicative.  You also don't have to remind me that it is wrong to assault people for making innocent comments that tend to grate at your last nerve! 

So................let's go back to the story.  I walk out of the school with my son carefully navigating him through the congested last day of school parking lot passed all of the hollering children, excited staff, bells, whistles and other very noisy non autism friendly incidents, only to get about 1/4 of the way to my truck with a child that is now in a full blown meltdown from the chaos. 

Oh hey!  I should mention that the parking area reserved for children with needs like my son was full of staff member vehicles at the time and my son and I were given an opportunity for some extra exercise that day.  (and many other days that school year but that is another blog entirely)

Ok......here I am 1/4 of the way to the truck, on pavement, buses, cars and pedestrians coming and going noisily all around us........meltdown in full swing , trying to inch my way with my now punching himself in the face / noodle leg son.  Alright, that's it!  Time to just pick him up and get to the truck.  Did I mention my son out weighs me?  So in my perfect squat, shoulder press into the child's abdomen, dead lift into a fireman's carry stance........I make my way with my son draped butt in the air over my shoulder while carrying his bags and last day of school goodies in my other hand.

Next step........entering the vehicle!  NOT!  This is when my son's "draped over my shoulder" position turned into the straightest most perfect plank you've ever seen.  You know it's hard to bend a child at the waist and seat belt them when they are determined to remain stiff as a board.  Wrestle, coax, sing, hum, massage, and about one hundred other methods quickly were employed to sooth his irritation enough to 10 minutes later allow him to relax, bend himself into a seated position and be belted into the safety harness and seatbelt for the ride home. 

I live 20 minutes from the school my son attends.  Most days this is fine.  This particular day..........THE END OF SCHOOL CHAOS DAY.......was definitely not.  What this looked like was I'm sure a video recorded by some cell phone toting face book posting person as the dumbest driver ever!  I drove out of the school parking lot, made it exactly 1/2 mile before the banging the head on the passenger side window began.  Alright I thought "here we go" as I pulled the truck over, arranged the pillows in a head injury prevention array, back into my seat I went and off I drove again.  Another 2 miles down the road the pillows enter the drivers seat by way of air travel directed at my head.  Next came his shoes which made a perfect bull's-eye on the back of my head one right after another.  "This I can deal with" I thought as I tossed the pillows back over the seat still driving trying to get as far as I could before the next imminent emergency stop.  Six more miles pass and the head banging began again.  Round 2 of pulling over, rearranging pillows, securing seat belts again, moving hard objects and attempting to sooth a very distraught child.  Back in the drivers seat I went for an attempt at beating NASCAR records and just make it home.  Maybe if I got pulled over it would've been a relief.  "Officer, yes, I'll take the ticket if you ride in the back seat on the way to my house so this child will stop punching himself in the face".  Oh.........punching in the face........I shouldn't have said it now, nor thought it then because that was the next phase.  Yes, the "there's nothing you can do about this while you're driving" face punching began as well as about 10 more stops to make it the remainder of the 12 or so more miles home.  It equated to what must've looked like some weird Chinese fire drill at Mach 4. 

I pull in the driveway hoping that Publisher's Clearing house would be there with my winning check.......or at least a babysitter.........ok.......at this point I'd settle for a bath and a cocktail but that wasn't going to happen.  My son noticed the familiar turn into the driveway and the ever so comforting bumpy driveway he took the cues that we had indeed arrived at home and immediately calmed down.

His face turned into sort of a relaxed and at the same time triumphant peaceful expression and I made my way with him from the truck to the front door of our home.  This is fantastic I think to myself!  He's calm.  The meltdown is over!  On with my evening!  This time I was correct.  The rest of the evening went smoothly, my son was put to bed at his normal time and life was good!  That is right up until the next morning when school no longer existed.  Rather...........his ROUTINE no longer existed.  I had 2 choices at this point.  Get him ready for school drive to the parking lot and sit there to make him happy; or................begin the long grueling task of day after day after day soothing a child unable to cope with transitions into "enjoying" life at home for the summer. 

Here we are 46 days after my story begins.  No trips to the park have been taken, no sea world, no Disney land, no camping trip, not even a trip to the grocery store.  The most that can be said is that my son is beginning to adjust to normal days at home with out the Monday thru Friday classroom trip.  He is beginning to feel calm about the routine he through the school year only experienced on Saturdays and Sundays.  He is beginning to warm up to taking small jaunts in the truck for an occasional garage sale or trip to the post office.  That's it!  That's as far as 46 days can take him!  46 days later he is still in mental captivity unable to adjust to the change.  46 days later I am still in captivity watching him struggle to adjust.  This is the same countdown that we have done every summer for the last 13 years of attendance in school and will continue to do for the next 5 years until graduation.

There are about 35 days until school starts again.  By my calculations, he will be perfectly transitioned into summer time living about 5 days before school begins.  So?  My son's terrific "do fun things" summer vacation will consist of the last 5 days of trying to cram school shopping, doctors visits, paperwork and classroom prep and visitations.  So to the teacher that unknowingly asked my son and I about our great "plans for the summer"  I can only say "You're an asshole". 

See you next school year while we take the first 2 months just to get used to going to school again.


RANT if you must, Rave if you must, but most certainly..........smile, laugh, and turn it into a sarcastic remark for someone else to laugh at! 

See ya for the next round! 

From the author of "Autism and Assholes" amzn.com/B00EKRNW7W 

Babysitters

Let’s talk about babysitters for a minute.  Considering the fact that the going rate for babysitting one child with standard care needs is $10.00 an hour now, what the hell are families with disabled children supposed to do? Apparently there is an idea out there that if you give birth to a child with a disability, the money fairy visits the same day and blesses you with millions?  I guess I must have pissed her off because that chic never showed up!

I was lucky in the early years to have older children that could handle their little brother for breaks for work, volunteering and the occasional “date night”.  After my other children grew up and developed their own social lives, the need for babysitters rose considerably leaving me with two choices.  1.  Never go anywhere again as long as I live or,  2. Rob a bank to come up with the money I need to pay a babysitter capable of handling my son.  Don’t get me wrong here,  my son hasn’t maimed anyone yet!  His behavior is not violent towards other people; just himself. The problem is that he can make you kill yourself trying to protect him from himself!  How many people can really truly handle that sort of an emergency coming from a growing teenage boy?

This is what ends up happening in reality.  I have the sitter here waiting with my husband and I (all the while they are adding up that hourly rate) for my son to be still and asleep.  We leave the minute he is asleep safely tucked into his room and run out the door to the nearest “fun exciting place” I can find.   Usually we just settle for a good steak and quiet conversation and sometimes we can get through dinner or our errands before the babysitter calls to say they’ve heard a strange noise coming from my sons room or that he has become upset.  This ends the already hurried and stressful romantic night out and leaves us dashing home to check on what often times ends up being something only the two of us can handle and we send the sitter home with cash in hand for a job not even done.  Sound bitter?  Yup, I am when it comes to that part.   A decent hourly wage for watching TV and not cleaning up after themselves, yeah babysitters can end up as another asshole for the list!  Scenario #2 is worse and usually involves being called home for an episode that they were instructed on how to handle and could have easily handled.  I could go on but it might wreck the reputation of babysitters worldwide and get me banned from all babysitting service posting sites permanently.

When it comes to leaving my son with a babysitter, I go through the same range of emotions that any normal parent does “How fast can you get here? Hurry up I’ve got to get out of this place!”  Which is replaced soon by “You have how many tattoos? You’re from what twelve step program?”  And last but not least “Never mind I’ll just cancel my plans.”

 Now on top of that when looking for a sitter for my son, there is another list of crucial questions to ask:

1.             Can you put an Octopus in a sack?

 

2.             Do you have a sense of smell and can you remove it before you come?

3.             Can you curl eighty pounds of child with one arm while dialing the phone with the other?

4.             Can you thwart Ninja skills?

5.             Can you put faucet handles on and take them back off by yourself?

6.             Are you a digestive expert?

7.             Can you understand non-verbal Ninja communication?

8.             Can you do an “Abs of steel” video for six hours straight?

9.             Can you watch the front door, the back door, the side door, the fridge, the pantry, and the bathroom all at once?

10.         Do you already have a personal injury lawyer?

Well, there are a million more serious questions than that, but you get the idea.  Babysitters are few and far between and hard to come by around here.

The last adventure I had with babysitting went something like this:

I call the potential babysitter on the phone to see if they are available for the day in question.  Babysitter mulls it over and decides to get back to me later.  Much later.  This time I luck out and the babysitter calls back 2 days before the event and says “yes I can watch him”.  Now remember that statement “watch him” as it will come in handy later in this story.

Great!  I am thrilled that I get to go somewhere with my husband and the sitter is confirmed!  Hurray!

Two days pass and my excitement builds for a few long awaited hours of rest and fun!  The babysitter arrives right on time!  Super!  This is going awesome!  Dinner is ready for the sitter and I point out the plate of food on the table.  Now I do the rundown of vital information which doesn’t take very long because this sitter is familiar with the house and my son.  “Nothing should happen or require your attention at all because he is already in bed asleep and all you have to do is listen in case he wakes up”, I tell them.  No problem,  everything’s under control.

So I am out the door for the first social evening with my husband in a very, very, very long time. Out and about enjoying time with each other happens so rarely that every second of our few hours is an absolute treasure.  Every bit of it is soaked up and he and I are all smiles.  The food is great, the atmosphere is great and life feels really really good.  This is when one or the other of us looks at the time and realizes it’s time to head back home.  Ok, well, my son is asleep, there’s been no emergent call from the sitter, no reason the date can’t continue on after arriving home and sending the sitter on her way, right?  WRONG!  Never assume anything.   That is the rule to live by if you’re going to survive.  I walk in the door with my husband still on cloud nine from our time alone.  Giggling and laughing and holding hands soon gives way to an unsettling feeling as we don’t see the sitter in the family room area where the comfy couch and tv are.  Ok, so head down the hall a little faster now towards my son’s room.  This is where I find the sitter engaged in an all out debate with him.   The sitter is trying desperately to convince my blind son into dropping the “present” (we’ll call it that)  he made into a plastic bag that she is holding at the end of her outstretched arms in front of him and offering him some toy she found in trade.  At the same time I notice this, I also notice that the sitter is fighting back a distinct gag reflex.  My son is completely naked, he is laughing and refusing to comply with this strange request and his bedroom behind him is a work of art with every kind of toy and inflatable thing he owns strewn in beautiful abstract fashion all over the room.  The blankets for his bed are in the hall, the clothes he was wearing when I left are in the toy box, the legos are on the bed and the inflatable orca is somehow leaned up against the ceiling fan vertically resting on one tail fin.  To this the sitter stated “I’m having a bit of trouble here”.  Alright, no big deal, my husband and I quickly take over, all feelings of romance properly squelched, my son laughs hysterically some more, the “present “ is removed, he’s put in the tub, the room is put back together and scrubbed and the sitter is compensated way more than the hourly rate, offered a snack (which she declines) and sent happily on her way back home.  (I think there are still rubber tire squeal marks in the driveway from her rapid exit.)  Now my husband and I start my son’s day all over again knowing that it might end around 3 or 4 a.m. if we play our cards right.  I overheard a lady once complaining about how difficult it is to find a sitter that she’s happy with for her nine year old non-disabled daughter.  On the outside I smiled and said, “yes good sitters are hard to come by”, but on the inside I was thinking “oh you have no idea asshole”.

Author Interview

I was recently interviewed on Autism Family Center website blog regarding my book "Autism and Assholes".  You can see the interview at the link below.

Who knows?  Maybe it'll give insight into my twisted and warped sense of humor!

Thank you again to Autism Family Center!  You were a pleasure to work with and I am grateful for the inclusion! 



http://www.autismfamilycenter.com/1/post/2013/10/autism-and-assholes-interview-with-the-author-marie-duke.html

That's not a children's toy!

That's not a children's toy!

Wouldn’t it be awesome if the “Little Tikes” toy company made adult size toys?  Remember the little yellow and red car, the clubhouse, the slide and teeter totter, the jungle gym?  It would be so great if these things existed in adult size!  I, oops,  I mean my son would have so much fun!  Physical play is a big deal to my son so a lot of improvising takes place around my house because he is unfortunately too big to utilize the types of toys he is interested in.  Couches become instruments of climbing and scaling, stairs become bumpy slides, pillows and blankets become huge forts and tents to hide under, office chairs with rollers become amusement park rides, closet doors become vertical swinging objects,  exercise bands become huge fun rubber bands to shoot at people, the kitchen faucet becomes a waterfall (whoooopsie), the coat closet becomes a secret hideout, washing machine a personal sound discovery device, the power tools become noises to parrot, and the vacuum cleaner becomes the evil villain to run away from.

It’s really amazing how much I’ve forgotten, since the son I’m speaking about is my youngest,  how many different types of things my son uses for “toys” that used to be considered, well, not toys.  It’s nothing out of the norm in my house to hear as the family rounds things up for an outing “hey, did you get some toys for the ride?” in which the reply is usually something like “yeah, I grabbed the giant plastic spring, the vibrating massage pillow, the dog squeaky toy, a blob of play dough and a leather combat boot”.  Oh good, that ought to keep him happy for the ride!  Then I get into public and someone sees my son lovingly squeezing a combat boot next to his chest and smiling happily and I realize “clearly this asshole doesn’t understand the true glory of the smell & feel of a leather combat boot?”.

My son once spent over an hour in the shoe department at the local “everything’s in there” store.   You should know that no one in my family was shoe shopping at the time.   We had gone to walmart purchase things for the kids with the gift cards they had received in the mail for the holidays.  After a lot of meandering around the store letting him touch and feel everything he passed, he came upon the leather shoe aisle and this is when my husband and I decided that we better buy something from that aisle with his gift card or permission to leave the shoe aisle would never be granted.  Ok, it’s not just him.  I love the smell of leather too!

Another “take my son shopping trip” ended in a not-so-beloved purchase of a rubber squeezable duck call dog toy.  This one he found after only thirty minutes in a sporting goods store while my husband and another son perused the ammo and gun counter.  I knew I was in trouble right away when his cute little hand reached out exploring the objects hanging from the rack in the duck hunting gear aisle and instead of settling on the quiet stuffed duck, or the silent wooden figurine, or even the nice hat with the duck on top, landed quite decidedly (almost like some sort of radar led him there) on the squeaky, noisy, ear shattering doggy toy.  He fell instantly in love.  The first squeeze of the pliable rubber duck resulted in a loud shrieking that sent him into a little bit of a shiver but quickly gave way to a mischievous smile that kind of rolled across his face.  It was all over from there.  For the rest of the duration of the shopping trip I saw one fellow shopper after another running for cover!  Thank God this was a sporting goods store and most of these people are mentally equipped to deal with “duck and cover” situations but at last the patience started wearing thin and I decided it was time to leave as I saw quite a few more people than usual headed to the gun counter.

My son has a few other favorites that he chose himself from a careful and thorough search of the local department store.  Up and down every aisle he goes carefully touching, squeezing and sniffing every object that catches his grasp.  The favorite aisle besides the shoe department?  The dog toy aisle!  Of Course!  All of those rubber, squeezy, squeaky, smooshy things to really press his hands into and pull and push on!  This is real fun!  Yep!  For him this is complete toy perfection!  For me, it is a constant explanation waiting to happen when the assholes I run into in public want to know why I’m buying my child dog toys or even worse, why am I letting him play with a toy that might of possibly belonged already to the family dog?  Hey asshole!  You have your favorite toys, he has his!  Back off!

The donut of destruction will always be remembered in my house as the most beloved toy.  No match box super highway racer set, no easy bake oven, no nerf football set.  No, the one I will always remember the most when I am old and grey trying to rekindle all the sweet memories of raising children will be the “donut of destruction”.  Right now you’re scrambling trying to remember whether or not this cool toy came out in it’s biggest glory before cabbage patch kids or after G.I. Joe and power wheels jeeps.  Well keep trying but you’ll wear yourself out thinking about it because the Donut of Destruction is actually a leather steering wheel cover that my son drug around with him everywhere he went for about three years.  This was the favorite toy; hands down.  The Donut of destruction apparently could fight off evil forces and sometimes an unsuspecting school teacher very easily if just slipped over the head and arms and worn proudly around the waist.  It seems as though if you wear a “donut of destruction” nothing at all can harm you, and your family can easily go many more places without upsetting you than they can without.  The term “donut of destruction” was actually a stolen phrase from a children’s alien movie my family and I watched that just seemed to fit the situation and became our name for the steering wheel cover that my son loved so much.  That is, until one day, without any written notice at all, he suddenly decided he was done with it and on the search we went for the next perfect toy.

Shopping for toys for my son can be an arduous task.  Trial and error over the years led my husband and I to the general type of things he prefers to play with, but then comes the “destructible and indestructible factor”.  Just because my son might love the texture, feel or sound of an object doesn’t mean he can have it.  He might love it so much he’ll pull it apart and eat it, or he might use it to bang his head on.  So as you can imagine, a lot of things are a part of the decision process when choosing a new toy.  It goes something like this:  “oh honey did you see that?  He would love to play with that squooshy ball” My husband grabs the squooshy ball with all the little rubber furry pieces and begins to pull twist and turn it with all of his might while I stand as a look-out and try to scope out where the store cameras are.  Well, after all, the toy budget is only so big and the E.R. budget to remove inedible objects from the intestines is not big either.  So these things have to be checked out before we waste money buying something he won’t be able to play with safely.  So I’m standing look-out, my husband is still squeezing and pulling and POP!  There goes the squooshy ball that my husband now drops into the bottom of the bin and quietly says, “no that one won’t work”.  Then we move onto the next interesting looking item and start all over again.  My husband strains and strains to see if an object will break, fray, come apart, release small pieces or be hazardous in anyway; I stand guard to keep him from going to jail for vandalism.  I would take this job but my son has become pretty strong so my husband has no choice but to play the part.  So on and on it goes until something is found that after all abuse is inflicted is still in one piece, has all the attributes my son loves and is affordable.  One thing's for certain, if you find a toy or an object that says indestructible on the package, I can tell you right now they are lying.  I’ve bought them all, and they were no match for my son.

At thirteen years old my son built his first unassisted Lego tower using the preschool large size Lego blocks.  I awoke one morning to see about eight Lego blocks laying next to him on his bed put perfectly together into a tower shape.  Laugh all you want, but I cried just as much this day as the day he learned to walk.  This was the first time he had played with a toy and understood or decided to use it for its intended purpose.  I was so excited I made him (after he woke up of course) do it again and again and took a million pictures.  This was a great day!!  Up until this point, my son thought Legos were for throwing at the wall specifically between the hours of midnight and 5 a.m.  Apparently this particular evening, the Lego fairy appeared and explained the situation and now, understanding his mission properly, my son built a beautiful tower!  Of course I called someone to brag about my son and found the usual asshole answering thought this really wasn’t that big of a deal and proceeded to tell me about their ingrown toenail like it was as exciting and tragic as a shark attack.  Never mind asshole “I thought” as I hung up the phone and went back to my son to build some more Lego towers.

The favorite toy to play with in the house outside of his room is the vibrating foot massager.  You know the kind, you’re grandma might have one, or sorry, you might have one.  You plug this thing in and it’s rubbery plastic bumpy massage surfaces vibrate and the little metal balls rotate a million times a minute in some sort of a foot frenzy.  Oh but wait!  It has heat too!  And if you act now, I’ll throw in a donut of destruction and a super rubbery bath mat to wear on your head.  Oh, sorry, got carried away there.  So the massage toy is his favorite when he’s hanging out around the house.  He starts out with this at his feet in the kitchen chair, giggles and laughs while it tickles his feet and slowly, but predictably works his way down until his bum is right on top of it.  Now the real laughter begins.  As you can imagine this is quite the sensation and it’s a wonder why there aren’t one of these in everyone’s home!  Soon enough though he has to be talked back off of the machine as the motor begs for mercy and starts to wind down from his weight.  He even laughs at this part and then back he goes for another foot tickle.

Recently my son has shown a new interest in music.  He has always tolerated it and sometimes enjoyed it to some degree, but the teenager in him is certainly out in plain view now as he continuously is taking my other son’s phone or my phone when he would hear them playing music.  Well it is a happy thing in my house when he shows a new interest in something.  His dad went right to work setting up an old MP3 that just happens to feel a lot like the smart phones the rest of the family plays music on.  Now, his favorite toy is this MP3 loaded with all of his older siblings favorite music.  It’s a chore to get it from him just before he goes to bed for the night.  I hear MP3’s are not good for the digestive tract so this one doesn’t stay in the room at night just so I don’t have to push the child’s belly button the next day every time I want to change a song.  Who’s the asshole now?  Well it’s anyone who tells my son that this MP3 is bright pink and is indeed not a phone.

A chapter from the book Autism and Assholes

Carpet disposal

Carpet in the hallway?

Well there was a minute ago until my son discovered how to pull it up from the baseboard and peel half of the hallway up off of the floor. 

Oooooh!  Carpet padding!  Yummie! 

Quick grab the child, whisk him away to another room whilst he becomes agitated at the stopping of his newfound game.  Now the face punching begins.  Calm him down, prevent head injuries and sooth his stress with a fort (blankie over the head) his rocking chair, a story tape and a big giant stuffed fish pillow. 

Run back down the hall before he realizes I've gone and more unsupervised mischief can be had. 

Put back down the carpet making sure to step firmly with my bare feet on every piece of carpet tacking as I go.  Cuss secretively so the child does not hear and decide to begin speaking for the first time today and repeat the F word.  Trim off strands of carpet that he pulled loose so he cannot unravel the entire hallway later on.  Run back to the child in the rocking chair to find he is not in the rocking chair, but in the pantry eating 3 cookies still in their wrappers.

Bring him back to the office with his large pile of favorite things and try to complete the days work.  Turn just in time to see the desk just before it is completely pushed over as the little guy flashes the cutest devilish grin I've ever seen.  Remind him as I turn the desk back on it's legs that this is not a good idea. 

Go back to work with him seated 4 feet away happily humming and flapping along with his favorite foot massager.  Next it's the end table..........over it goes.  Stand it back up, move him over again, re-offer more exciting toys.

Now the head banging has begun.  Thankfully, God equipped me just before my son was born with apparently very quick reflexes and I get to him just as he locates the door frame and starts to square off with it using his head.  One more concussion thwarted and off we go for dinner. 

It's just time to give up on anything else.

12 slices of thinly sliced turkey, 1 fruit cup fed in alternate bites with the turkey rolled into tubes, followed by 1 cup of vanilla pudding non dairy, to be followed strictly by 1 cup of juice, 1 oatmeal cookie, and 2 marshmallows.

Now the pattern is full and we are authorized to proceed with the evening. 

My house..........My circus...........My life! 

From the Author of "Autism & Assholes"


amzn.com/B00EKRNW7W   

What gives?

Paperwork after school is a must when your child does not speak.  Funny thing is, the paperwork never matches what the teacher says to me when I pick my son up from school.  Why is that?

Why is it that the form that is filled out throughout the day never indicates anything good or bad that the teacher mentions to me?  Which is correct, the teacher or the paper?  It's the aide that writes the paper each day, and when I ask about the activities that the aide did with my son for the day the teacher says "I don't really work with him for that", or "the aide usually handles that part".  So what gives?  Which is the one I should pay attention to considering the information conflicts.

I've confronted this issue before in case you are wondering why I haven't just asked "why does this information conflict?"  I was met with so much defensiveness, discomfort and stuttering that I felt I'd asked a politician about a scandal.

Next paperwork issue brings more confusion.  My son, if you're not familiar with my book or my posts, is blind, developmentally disabled, and severely autistic.  He does a lot of pre-braille activities with his V.I. specialist, a lot of mobility exercises with O&M, and regular classroom activities suited to him.  So why is it when I open his back pack I occasionally run across coloring pages on flat pieces of paper with no braille on them at all?  I'm trying hard to be understanding, and I get the idea of inclusion, but this classroom is where my son is because he is unable to be mainstreamed.  He is unable to participate or WANT to participate in other rooms.

So........this brings me to my point.  I am trying to imagine what benefit my son got while being forced to hold a crayon in his hand while someone else manipulated his hand and pressed it against a piece of paper with a drawing on it that he cannot see, with a color that he doesn't understand.  This is an often enough occurrence to warrant attention.  Honestly, I don't see the point in torturing him to do this one time, much less multiple times throughout each semester of school.  Isn't he in the "special needs" room where things are supposed to be adapted to suit his learning abilities?  Why did my son not deserve an activity that he could learn something from other than "hey lady quit sqeezing my hand" or "why do people think  this is fun?". 

Every time I think that I am too harsh or too hard on the people that work with my son I am shown just one more reason why I can never stop being harsh.  I've set up a meeting at the school with the teacher and aides to discuss some other "more beneficial" activities for my son to take part in while the other children are coloring.  If no one hears from me for a while, I'll be back as soon as I post bail for ranting and raving on school premises about incompetence and ignorance ........possibly laziness as well.

This has been yet another rant from the author of "Autism and Assholes"  Not the typical autism book.

Fish Bowl Syndrome

The Fish Bowl Syndrome

 I sometimes think that there must be some sort of really twisted cosmic rule that all families of disabled or special needs kids have to live out their lives in some sort of “fish bowl” for all the world to see, tap, shake, point at, piss in, criticize, change, or just ignore and dump out.  It seems to me that before my son was born with a disability I could’ve let my other children juggle knives and no one would’ve ever said a word.  I notice that the children that live down the street go virtually unnoticed to other adults in the neighborhood and their parents make decisions for them on a daily basis without scrutiny.  Oh sure, I had times before my youngest was born that I felt like some other person was telling me how to raise my child; but this was more like “are you going to let them jump on that trampoline? Or are you sure you want to send them to that school?  Never was it “I think you are not qualified to raise this child without sending him to a home” or “Why don’t you just give him up for adoptions” or “the huge and very intrusive  specialists staff and I will be at your home in 30 minutes to observe how your son plays in his own home, is that ok?”  I remember how it felt to be able to be a mother without the entourage of critics and professionals or spectators.  Have a disabled child and all of the sudden the solid walls of your once safe haven home are now glass and every portion of your life is now on display for all the world to see, debate, dispute, disregard, or dissect.  Comments are now not only it seems allowed, but required.  Interventions now loom in the minds of family members.  Conversations now exist about your family only to discuss this new ‘tragic’ event and its dynamics and nowhere in this does anyone discuss this new cute sweet child or who he looks like or takes after.  Now it’s socially acceptable for you to be told how to raise your child.  Now it’s not out of line for people to make comments that would never have been uttered before.

To the assholes out there I say this,  I plead this;  So few see my son as a human being but only as some sort of object that stands for the word disability and disorder.  Look at his face, look at his personality; it exists there and he feels it all just like the rest of us do.  This is a child whose entire family has had to fight relentlessly his entire life just to allow him to be treated as something other than a symbol of blind/autism.  We want to live out our lives the same way everyone else is allowed to live out theirs.  Let us exist in our realm of normal and stop interjecting because God knows that there’s nothing completely normal about your life either.