The Money Tree Died In The Drought

The Money Tree Died In The Drought

from "Autism and Assholes"

As I stated before, the money fairy or the money tree does not just automatically exist in my home just because my son was born with a disability and developed autism.  It just doesn’t work that way no matter what it appears that other assholes believe.  I’ll clue you in here to what I’m talking about with a few stories.

I am in the process of planning a trip on an airplane for the first time with my son in a few months.  This is for a very special occasion that I just cannot miss.  In trying to prepare for this with my son I have consulted with many people trying to gather ideas of how to make this tolerable for him and what tricks or tips the professionals have to offer.  To this I got a response of “just take him on 4 or 5 practice flights before the actual trip” so he can have his meltdowns on the ones that don’t matter and the special trip will go smoothly.  What asshole?  What are you thinking?  Do I look like I have a personal jet in my backyard?  Do I look like someone that recently won the lottery and can buy 4 or 5 airline tickets for 3 people just to “practice” airplane rides with my son?  What do you think this is the trump mansion?

Once I was talking about the air mattress in my sons room to a person affiliated with his care.  The conversation went on with me explaining how I wish there were a better alternative and I hated to have him just on a mattress on the floor.  This person then explained that it really wasn’t that big of deal at all and that there are tons of companies out there they make fully enclosable “safety” beds for autistic children and I could just buy one online and have it delivered.  Well, for once I was really intrigued and went immediately home and began my own self expert google search and that’s when I saw it.  The grand poo-pa of all safety beds.  The king of sleep and peace and quiet and insurer of calm sleep totally free of hazards and injury all for the bargain basement price of $8,000.00.  WHAT?  Are they out of their minds?  Not only is this thing 8 grand but I’m looking at it and already seeing the ways my Houdini could escape it, get out of it or tear it apart!  Eight Thousand Dollars!  So I picture this woman’s face again when she told me of this “no big deal; just order one online” deal and am thinking to myself at this point “ok asshole, I don’t know what world you live in but around here, 8,000.00 is what you pay for a car………not a bed!”  Oh wait a minute……….I’ll just consult the money tree or the finance fairy and it’ll be fine.  Hey wait a minute, I still have checks in the checkbook.  If you still have checks you still have money, right?  (calm down; I’m joking)

Now that we’re on to the topic of money and how it pertains to special needs children and more particularly my son, let me pull out my little soap box……..arrgh, ok.  I am officially on it so brace yourself, this could get ugly.  Wheelchairs;  has anyone priced a decent wheel chair lately?  Or how about those cool weighted blankets that children that crave texture and pressure love?  What about those special swings for $1,500.00 guaranteed to delight your autistic child?  What about just the cost of diapers large enough to fit a growing teenage boy?  How about the floor I replace about every 3 months?  What about special toys with special features that you can’t get anywhere but a special needs supplier?  All of them ridiculously high priced.  Hundreds and thousands of dollars for things that these kids; my son really desperately could use and benefit from.  Special seat belt harnesses $220.00 to keep him from exiting the seat and entering the floor of the vehicle.  Gigantic adult size car seats for proper safety traveling long distances $4,000.00.  Adult size strollers, $1800.00.  You name it it’s in there but you better be independently wealthy or have the most utopian insurance company out there in the world if you want to get your hands on this stuff.  So my question is this;  What asshole decided to make bargain bin toys and equipment to sell at walmart for every other normally physically advantaged child but decided “oh those disabled children, they’re a pain in the ass, let’s make them pay extra for everything they need.”  Graco baby stroller; $180.00.  Stroller for disabled child (way less advanced and luxurious; $1,800.00.  See my point?  Who decided that disabled children were the place to install price gouging tactics?   Even the guy that distributed this products and price catalog to the school room full of these physically disabled children is an asshole!

I had a specialist once recommend that I duplicate everything that was in the classroom somewhere in my home.  I agreed!  I thought this was a really productive and smart idea.  This would help my son learn the same skills at home as he is learning at school. Repetition and consistency was my line of thinking and I was on the bandwagon with this one.  Right up until I found out the cost of just a few of the things I would need to purchase out of about 30.  Yes, I could do this but then I’d have to explain to my other children that they could not go to college, could not go to prom, could not have dental work, could not eat food, and could not wear clothing except out of the donation box down the street.  Sure, no problem asshole……….I’ll just duplicate it.

Stores That Rhyme With Malnart

 

There is one place in the world that turns every single member of my family somewhat autistic.  I can’t mention the name of this store, but there’s a good chance it rhymes with the name Malnart.  My son hates this place!  I hate this place!  The whole family hates this place!  My son knows the difference between this store and any other immediately upon entering the doors without ever saying a word to him of where we are.  Why didn’t I tell him where we were going? Hah!  Because I know he won’t go!  Unfortunately, this is one of the only larger stores near my home so, suck it up and in we go.  Immediately the meltdowns begin.  My son cringes and covers his head in his travel fort ( a blanket he throws under his head and hides in).  My husband starts tuning things out completely and loses the ability to speak in full sentences other than giving the orders of his strategic plan to hurry get what’s needed and get the heck out.  My other sons stick close to each other trying desperately to make the best of the situation but signs of breaking out into a stress relieving wrestling match start to show as they laugh and push each other in the arm and start repeating the phrase, “mom, dad, got everything you need yet?”  My daughter and I become the most autistic here.  This is when we both start noticing every irritating factor about every other human being in the store.  The fluorescent lights start to give everyone in the whole family a headache, my son starts rocking a little more furiously in his chair, my other sons give up on goofing off and now follow sullenly behind just hoping the madness will soon end, and my husband and I exchange looks and comments of “do we really need to be in here? What was it we came in here for?  I think whatever we have now is good enough.”  My family and I blaze a trail to one of the two check out lines that are open in the long line of what must be 30 of them that exist.  Wait in line behind 23 old ladies with coupons and one person furnishing their entire house from the home and garden department.  Now the big meltdown begins because my son realizes he is in that place he hates, within the place he hates;  the checkout line.  People are too close to him, he can hear all of them talking, some of them are making rude sounds, things smell funny, that machine keeps beeping and he’s stuck in a narrow space with no where to go and the head banging begins.  So after I get my husband to stop banging his head on the conveyer belt, I address my sons head banging and force my way through the crowd in line as the other kids yell “I’ll help mom” and we make a break for the door leaving my poor head banging husband standing all alone in that terrible line waiting to buy stuff that he can’t even remember why we needed in the first place.

"Autism and Assholes"

My Strange Fantastic Life

I walked down the sidewalk with my son the other day as he carried a 4 foot long stuffed nylon covered toy fish and made his way to the truck to go to the store for groceries.  He also took with him his favorite towel that he draped over his head for that extra little bit of comfort, and in the hand not occupied by the fish, he tightly squeezed what was left of his snack......3 peach slices mushed together with a handful of Captain Crunch cereal.  oK!  Off we go to the store!  I looked up and noticed a few cars slow down as they passed my house doing a bit of rubber necking at the sight that I hadn't even thought about.  To me, to the rest of my family, and to my son this was normal behavior.  In my house, not only is it normal, it is celebrated, allowed, and embraced. 

My normal thought process would've included thinking nasty thoughts about the adults that stare like idiots at the special needs child.  Normally I would've become incensed that these people had no manners.  Then I looked again and giggled to myself..........ok, that does look really funny!  Not only does it look hilarious, but this kid can't see where he's going according to the passers by because of the towel over his head.  They don't know he's blind.  They don't know that he has this path memorized.  Heck!  They might not even realize it's a fake fish!  So I lightened up and thought to myself what a crazy, weird, nutty and wonderful life that I have.

My son brings whimsy where it would be solemn.  He brings laughter when no one else dares.  He brings the unexpected when life could get boring.  He brings milestones that other's thought couldn't be reached.  He brings meaning to the word trust.  He brings pricelessness to a random hug or touch of the hand.  He brings appreciation to a world previously taken for granted.  He brings innocence where only cynics existed before. 

My life is better because he is here.  My courage to go on every day exists because of his bravery.  My purpose on this earth is defined as his Mom and I can think of nothing better or more gratifying to do with the rest of my days.

 

Shutting Down Begins

 

It's only the third day of school and already my son has begun to shut down.  He does not want to leave his room in the mornings and get into the bath that he normally loves.  He does not want to go to the breakfast table and eat his favorite food.  He does not want to get dressed (ok, that part's normal) and he doesn't want to walk to the car and go to school.  Once at the school, he becomes frustrated and passive resistant about going into the building or even getting out of the car. 

 

This is different from his behavior all summer long.  This is even different from his behavior on the first day of school.  What do I think the problem is?  Well, how about the fact that on the first day despite all of my husband and I's requests to give him a few days to "adjust" the teacher felt it appropriate to take him to the loud school pep rally?  How about the fact that out of 3 and sometimes 5 adults in the room my son is either completely alone or all of them are trying to work with him at the same time?  How about the fact that my son is severely autistic and blind and none of the other kids in the class share his frustration with loud chaotic noise so the teacher turns up loud music for hours at a time?

 

Why is it that the school staff feels they know my son and what he needs better than I do?  Why do they have the right to go against his I.E.P.'s and ARDs and advice from outside specialists brought in to evaluate?  Why is it that they think they are above taking advice from his parents about how to approach him and how to help him thrive? 

 

How is it that a teacher and two "specialists" when I show up at school and find my son bouncing nervously in a corner can tell me "he's just fine, he's been happy like that all day!"?  If they are so well trained in the dynamics of autism, why do they not realize that this is indeed my son displaying extreme nervousness, upset, and withdrawal? 

 

How can a special needs child succeed in gaining more ground every school year if the entire first few months or entire first semester is spent trying to remind the staff of the things they finally started listening to at the end of the previous year? After witnessing all of the sliding from the normal rules of engagement with my son in the classroom, I am informed that he has "digressed" some over the summer.  Excuse me?  HE has digressed?  Actually, no asshole, it is you that has digressed.  In all of your time spent with your non-special needs children at home you have clearly lost some of the very small amount of understanding you gained over the previous year.  Clearly, it is you who has lost the ability to follow the guidelines laid out for him by numerous evaluations and I.E.P.'s.  Clearly, it is you who has decided to play God and decide for yourself which things are important and which are not so important.  I assure you,  differing from the plan is having a profound effect.  You just do not feel it because you do not pay enough attention to realize it's impact.  You don't feel it because you do not come home with him and witness what the rest of his day or night is like as a response to your non-compliance with the agreed upon program. 

 

After fourteen years in the "special needs" system, I see this every year and most of the time it lasts for the larger part of the year.  As I walked into the school yesterday I was informed that one of my sons close friends that attended the special needs classroom last year had been pulled from the school by his parents.  A look of quandary came over the teacher's face as she told me this.  Her statement was "I guess the parents just decided to home school."  I thought to myself "why are you so surprised?"  Is it possible that the complete lack of regard shown by the staff for what the parent knows to be the right approach for the child finally made these parents realize there was no future in this classroom for their son? 

 

Every year my son deals with this differing from the program approach that the teachers insist on trying to pull off.  Every year my husband and I start with gentle reminders, then scheduled meetings, then very blunt direct reminders, then finally rescheduled staffing, ARDs and IEPs.  Why does it take reminding the school system every year that there are lawyers out there that will fight for my son to get them to get back on track with the correct methods.  Why does my son have to suffer needlessly for the first few months of school every year?  Why is this time not important?  When I think of what could be gained in this time rather than lost, I am saddened.  I am saddened that once again, here my son sits with my husband and I at ground zero with the same people that have been working with him for almost 10 years. 

 

Isn't there some other less vulnerable class that the school could assign these teachers to? 

 

 

 

 

 

 

  

 

 

 

 

 

 

Abs of Steel

Abs of Steel

 

Did you ever buy one of those exercise videos that promises to turn one body part or another into some sort of very hard metal?  I admit, I’ve fallen prey to this a few times.  They really ought to be forced to name these videos more accurately, like “Buns of Pudding” or “Tapioca Thighs”, or perhaps “Abs of applesauce”.  Assholes!  Well, maybe to get the body parts of steel you have to perform the exercises on the videos instead of just buy them.  Note to self; “use videos.”  Second note to self; “people use DVD’s now and not videos.”

My son could actually produce a successful exercise and flexibility DVD (I used the modern term) if only he gave a crap about things like income, profits, corporations, or physical fitness for that matter.

To try his secret, sit with your legs crossed over one another.  Now when you think you’ve got the kindergarten style “crisscross applesauce” position down, tighten those legs up a little more and bring your feet over the opposite thigh so they are each touching your torso.  Do this without any sign of straining.  Place your right hand in concentration position over the right side of your mouth with your palm facing down and proceed to make the motorbike sound with your lips pursed tightly.  (Trust me that part is important.)  Now that you have yourself all set up, relax every muscle in your body as if it has turned to pudding; but NOT your Abs.  Now while keeping  yourself in that position, lean forward without breaking form until your chest hits almost to your legs and then back up to fully upright.  Do one set of a gazillion of these daily for approximately fourteen years and Voila!  Abs of steel!  See?  Nothing to it!

My Husband can hold my son completely upside down and he will sit straight up in mid air without any sign of straining and could do this hundreds of times if he felt the mood.

 My son often times removes himself from family activities and goes to a quiet place to do these exercises.  I remember one particular time that the entire family decided to do what he was doing and see if anyone could keep up.  After about thirty minutes, three teenagers and two adults had burning abs and a complete inability to sit or bend correctly for about a week following.

Chuck Norris has nothing on this kid!

First Day of School

First Day of School showed up today with rain, cool temps, and did I mention it's Monday?  Seems to me there ought to be a law against starting anything important on a Monday. 

As a mother of a special needs teenager, I expect some difficulty on the first day, first week, first month.............semester.  All the usual prep and planning went into pulling today's "first day back" off without a hitch.  The hitch came anyway!  I blame this on the fact that it is Monday. 

I am told that my son is not capable of "anticipating" activities, or "worrying" or "fretting" about upcoming events because he doesn't understand.  The important factor here is that this is what I am "told", but not at all what I "believe".  He tossed and turned and hardly slept more than about 3 hours last night so once again, the coffee pot was my best friend this morning.  My husband and I took turns making 2 or 3 (ok 4 or 5) pots between 6 a.m. and 8 a.m.  Really, why use a cup?  Just sip it right out of the decanter!  Better yet, just get a spoon and eat the grounds right out of the can. 

The drive to school showed signs of promise with absolutely no attempts at leaving the confines of his seat belt or proper position in the vehicle.  No real signs of trouble here except for that all to calm and still sullen state that seemed to scream silently "Mom, how could you do this to me?" as we drove into the school parking lot.  This is when the adventure began, but not with my son.  The staff never answered my requests last week regarding which door my son was to enter through this school year so here we sat watching both doors on opposite sides of the parking lot looking much like tennis match spectators with our little caffeinated heads snapping back and forth left to right.  Finally, since no staff appeared after 15 minutes, we text the teacher and say "which door was decided on?".  Another 5 minutes pass and she finally answers but only after my son has decided we have been sitting to long and has laid down on the back seat and settled into the too familiar passive resistance position with perfect "plank" form.

All was not lost and he willingly got out of the vehicle and walked into the school with his Dad and I offering encouragement all the way in.  Two steps into the door and there they are; the classroom teacher and the specialist excited and talking non-stop with all the normal first day topics.  My son heard this and made and about face to head back out the door.  I realized that I would again be hated this year as I reminded them both in a whisper that maybe we could all wait to talk to one another inside the classroom after he was situated.  This was met with looks of astonishment and disapproval, but they complied and off we went to the room. 

Next we got to the classroom door, went through successfully but apprehensively and walked to the desk where my son is assigned to sit.  This is when the same specialist that was just reminded to "give him a few minutes"  begins the bombardment of physically introducing all of the new students to my son immediately after he has gotten seated.  Now, since my son cannot see, naturally she wanted to introduce him by walking him to each student.  Sure!  Great idea!  But did we not just discuss giving him a minute to adjust?  Apparently, when walking into the classroom I passed through a force field that removed all ability to make audible noise come from my mouth because clearly these people did not hear a word I said.  My son took these introductions to the new students as a signal to exit this portion of the classroom and head to the other room to his quiet swing.  Immediately following behind him chatting all the way was the specialist and a classroom aide. When asked why my son was shrugging his shoulders, turning his head away, and beginning to bite his hand, I just answered "give him some time, it's the first day".  What I wanted to say was "because you're annoying the crap out of him and he's trying to decide how to escape your non stop verbal vomit". 

I left the school knowing that a phone call will happen later today. On the other end of the line will be a panic stricken teacher that just doesn't understand why the meltdowns began asking if I can come pick him up right away.  My answer will be "I'm on my way".  What I wish my answer could be is "I told you so asshole!"

Back to school prep

Well, it's definitely that time of year again!  The mobility cane is by the door and the back pack is full of all of the essentials; diapers, noise muffling head phones, squeeze toys, lunch box, diet restrictions list, emergency information lists, 2 complete changes of clothes, and the toy my son took with him from the classroom orientation that needs returning.  All that's left to do now is give a quick hair cut and a finger nail trim then it's off to bed with my little guy for the first day of 7th grade in the special needs classroom! 

Mistake; it is always a mistake to use the word "quick" and "haircut" or "nail trim" in my house.  Grooming practices are to my son what Kryptonite is to Superman. 

So, here I go for another attempt at the hair cutting process that my son has successfully turned into an hour and a half project as opposed to last year's 4 hour project and the year before non existent process.  Since no hair salon has quite that much mal-practice insurance, and I couldn't talk the doc into sedatives for fingernail trims, the hair cut began while my son calmly sat at the kitchen table.  I gave a verbal warning (it's only fair) that the hair cut would begin shortly and watched the escape route planning begin quietly in his head.  To my surprise, he remained calm and sat quite serenely at his favorite seat at the table.  Ok!  We're off to a good start!  In I move with my best attempt at a calming yet firm approach reminding him that the hair cut will not hurt him and that it will be finished very quickly if he will sit still.  Snip number one..........no reaction but to check out the comb in my left hand with his wandering right hand up and over his head.  No problem!  Let him check it out and on we continue with snip number two!  Still no negative reaction.  This is cause for celebration!  No head banging, no punching himself in the face, no attempts at an escape!  Hurray!  Snip four.............oh I may have celebrated too soon.........up he stands slowly from his chair and begins to feel around the table for what I think was probably an object to throw at me.  No, he just walked slowly around the table as I followed for snip six, seven.......and several more!  Now we've made it all the way around the table and the trimming is done on the back of his head.  At this point I am overjoyed that in just 30 minutes of circling the table we have accomplished so much of the hair cut!  Terrific!  Apparently my son reads thoughts.  Now it's out of the kitchen we go as I follow behind snipping occasionally and my son reaches for his Dad's hands.  (poor little guy didn't know his Dad was in on the hair cut idea)  As my son leads my husband around, I continue to snip and my husband hands him one distraction....um......I mean toy....after another.  He's on to us now.  Now no toy is interesting, no amount of walking is satisfying, and nothing is more important than finding an unlocked exterior door to escape through.  Locked!  They're all locked!  Now the beginnings of a meltdown start to show as my husband pulls a magical marshmallow treat out of his bag of tricks and temporarily thwarts the impending head banging.  Snip, snip, snip, I sneak in for several more quick moves and quietly celebrate that we are now done with the back and both sides of his head of thick hair.  Super!  Now we just have to cut the top and we're free!  This is when my son again reads my thoughts and although he cannot see a thing, maneuvers perfectly around both my husband and I, slips between us and the entry table, back into the kitchen and straight to the kitchen sink in an apparent thought of "touch me again and I'll throw all of this water on you".  I even watched a little smirk roll across his face as he picked up the Tupperware thermos sitting next to the sink.  Ok, so we get a little wet, I'm thinking.  My husband and I glance at each other in a silent understanding of "it's now or never" and move in to complete the job.  My son now happily splashing in the sink and pouring water from the thermos knows we are approaching and begins to pour water faster.  I use this to my advantage and move in quick to trim what's left of the shagginess on top of his head.  Snip, snip, trim, trim and we're just about done when the full thermos of water splashed across my shirt, my husbands pants, the cabinets, and the floor.  This is when he really started to move as he grabbed my husbands arm with what appeared to be the thought of "Dad, hurry up I don't have any more water to throw at her".  A couple more rounds through the kitchen, one more try at the front door and a trip down the hallway towards the bedroom with me following behind and his Dad being pushed along, the hair cut was complete.  A new record!  One hour and thirty minutes!  We cut the record from 4 hours to an hour and thirty minutes in one year!  My son's courage is definitely growing!  My son celebrated with an extra dessert after dinner.  My husband and I celebrated by cleaning up all the hair after my son was tucked into bed. 

Happy "back to school" time everyone!