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! 

Summer Time Amnesia

How is it that one classroom teacher, two classroom aides, and two highly trained specialists can forget over one summer's time how to (or how not to) connect with my child that they have worked with for 10 years?

Summer time amnesia is the excuse I'm giving them for now.  After a week or two of school, the amnesia excuse will begin to fade and I will most likely develop "diplomacy amnesia" and spew out a verbal bull dozer of frustrated reminders.

I took my son for his "private" before school starts visit to his classroom.  The private meeting's sole purpose was to get my son reacquainted with his classroom to ease his transition back to the school year on Monday.  Great!  This is always a great idea!  Gives him a leg up and some ahead of time warning of what is to come.  My son did great on the way there even showing excitement and anticipation when he was told we had turned into the school parking lot. 

Now, since my son is severely autistic, and he is also completely blind, you would think after all of the years of working with him that these people would understand to give him a few minutes to adjust as he reacquainted himself with the classroom and the staff.  Makes sense right?  Wrong! 

My husband and I waited with my son at the entrance of the special needs area of the school to be let in and my son stood patiently as we watched him mentally catalog the feel of the brick, the glass doors, the smell of the school parking lot, the sound of the A/C equipment, and the feel of the concrete.  No problems!  The approach to the building went off without a hitch!  Then the school doors opened and out popped my sons favorite specialist to greet him.  He immediately took her hand after hearing her voice and allowed her to lead him into the building.  Fifteen feet down the hall towards the classroom I see my son think "wait a minute", where's my mom?  This is when his sweet hand started the search pattern and the hesitating step backwards.  I moved closer in and he felt my arm and chose to walk into the classroom with me after some reassuring.  Super!  He immediately checked out the symbol at the entrance to the room, recognized it and entered the classroom headed straight for his desk as an expression of comfort and familiarity rose over his face.  That expression stayed there for all of about two more minutes until he located a set of desks in his way and got confused.  My husband and I step in to reassure him that this is his desk and it has just been moved (translation; the whole assembly of desks is completely rearranged).  As my husband and I gave each other the usual looks of "what's the deal with always rearranging?", we let it roll off our backs and moved on with our son.  Now my son decides this is not going to "roll off his back" at all and refuses to continue walking.  "Spaghetti legs" happen quite regularly when he does not want to continue about a particular event.  I understand this and I give him time to readjust because I feel that same "spaghetti legs" feeling every time I'm approaching the door at the entrance of the annual ARD meeting at school.  No problem.  I understood and we waited while he regained his composure.  The "favorite" specialist stepped in to help and he felt good enough again to resume to tour.  All the while I was wondering if he was thinking "I really thought Mom said school didn't start until Monday."  His Dad and I proceeded with our son and the specialists through the next area of the classroom to the "activities" area and this is where the launch of the inquisitors took place. 

One classroom aide approached and said hello, my son reached out his hand to check her out then withdrew.  Another classroom aide approached and began to talk to him at the same time the other aide was still speaking to him.  This is when my son put his left arm inside his shirt and took a step backwards.  Now the first aide and the second aide are talking to the specialist still with us about their summer and my son takes another giant step backwards as his other hand goes towards his mouth to stim.  All conversations continued and at the same time all three individuals started asking my son and my husband questions about our summer at the same time.  So now we have about 7 different dialogues going on out of only 6 people, one of which is non verbal, and only my husband and I notice my son take another giant step backwards and begin to bounce and bite his hand.  Everyone else just continued to delight in their own words.  Now my husband and I interject and redirect him to the 'favorite' specialist where they walk together to his favorite swing in the classroom.  This fixes everything momentarily.  The swing is familiar and happy and for a moment, conversations amongst the adults in the room can continue unpunished.  Fast forward 10 minutes and the swing is apparently tired so on we go to the rest of the classroom and the staff's verbal flood towards my son begins again.  Now he is surrounded by 5 adults plus his parents and all 5 staff members are handing him things, asking him questions and trying to direct him towards objects AT THE SAME TIME, all of this while continuing to try and resume questioning my husband and I regarding his summer progress.

 Now my son is led to the hall to visit the "new special needs gymnasium".  This is in a part of the school he has never been in and the room is large and echo prone with a huge A/C motor humming along noisily in the background.  Problem.  Not one more step will be taken.  My son does an about face, grabs my husbands arm with a death grip and directs him (by way of pushing) away from this room and down the quiet hall.  This is where he stayed for the next 15 minutes for what I think was fear of another attack of the over eager staff.  Finally my husband and I talk my son into reentering the classroom and he requests a snack from me out of his handy dandy snack bag I carry with me.  This is when the stupidity completely takes over and I am confirmed in my belief that all of the staff is suffering from summer amnesia just like every other year.  As it turns out, summer time amnesia is quite serious and can take well into the second or third month of school to cure.  (that is, of course if the patient in question will accept treatment)  I am confirmed the diagnosis of amnesia because as soon as my son requests his "snack" from my bag, a frenzy takes place of "oh get his lunch tray" and "let's sit at the table" and "where's his special fork?"  Now let me ask you a question?  How many of you force your children to eat pre packaged snoopy fruit gusher gummy snacks off of a plate with a fork?  My sons expression turns from the before apprehensive look to the "are these people really this stupid?" look. At 14 years old, with severe autism, intellectual impairment, and a complete lack of sight, I could honestly swear my son rolled his head in annoyance and disbelief.  After about 10 attempts at letting the teachers know that he usually just pops these in his mouth and continues on about his business and that would be fine since we were just there for a short visit, I gave up as no one could (apparently) any longer hear my voice.  Summer time amnesia is sometimes accompanied in extreme cases by selective deafness.

After going about all of this business for only about an hour and a half (but seemed to be much longer), my son informed my husband and I that we were done by grabbing both of our hands and pulling us in the direction of the exit.  I grabbed at the opportunity like it was a bag of free money and walked happily out of the room with him and towards the parking lot listening to the entourage that followed behind with a list of meaningless reminders for the upcoming first day of school.  My son helped us locate our vehicle down the side walk and into the parking area and found his door to the truck, happily assisted us in getting him in and buckled up, reached for his giant stuffed pillow to squeeze and smiled with what seemed to be a thought of "poor little assholes can't even remember how this stuff all works".