Rules for Saner Living

Living with a person who is on the Autism spectrum means adapting to some pretty quirky behaviors.  These behaviors are different for every person, family and sometimes even situations.  Some behaviors need to be corrected immediately, others are pretty inocuuous.  In our house, we  have developed some rules that we live by every day.  Failure to not comply with these rules can lead to anything ranging from sheer fun, a long and drawn-out meltdown or (heaven forbid) something catastrophic as Joel is almost completely unaware that he is not indestructible.

I broke the first rule about making sure all the doors are locked this afternoon and Joel got into the bathroom and started the bath.  If I didn’t let him take a bath, there would have been a huge meltdown.  So, while I was sitting next to the tub intermittently squirting shaving cream onto his outstretched hand, I wrote out this list.  I am seriously considering printing it out in bold lettering and tacking it on the wall for everyone to see.

Our Thirteen Commandments

1.  Thou shall check all door locks (this includes bedroom, bathroom, cabinets, refrigerator, closets, drawers, door leading to the garage and the front door).

2.  Thou shall use a quiet, indoor voice.  (This is very difficult as we are all a bunch of loud talkers.)

3.  Thou shall not interfere with Joel’s piles of stuff in his presence.  

4.  Thou shall not sing to Joel-EVER.  

5.  Thou shall not put silverware back into the silverware drawer in Joel’s presence.  

(Seriously, if you make the mistake of breaking commandments 3, 4 and 5, you probably will get hurt.  He does not tolerate these things and will have a meltdown, jump at you like a pro-wrestler, pinch you, bite you, whatever.  It isn’t pretty.  We have learned the hard way.)

6.  Thou shall keep the kitchen stocked with popsicles, sliced cheese, sour cream and cereal.

7.  Thou shall learn to deal with nude gymnastics at all times of the day. 

8.  Thou shall forfeit your blanket if Joel wants it, even if you are in the process of using it.  (Cold?  Go put on a sweater.)

9.  Thou shall not use the computer chair for its intended purpose.  It is for spinning.

10.  Thou shall fast-forward past all the “boring” parts of Sesame Street episodes (the first 20 minutes) and go directly to the Count or Elmo’s World.

11.  Thou shall keep all books, magazines, mail and any other paper  put away or at least out of reach unless you want them to be torn to shreds. (Joel does not descriminate between the electric bill or your expensive college textbook.)  

12.  Thou shall keep all drawing materials, crayons, pens, pencils, markers, etc put away unless you want some modern art on the walls or furniture. 

13.  No small objects are to be left out as Joel puts everything into his mouth.  EVERYTHING.

So, those are just some of the rules we live by here at Casa Our House.  I’m sure other families on the spectrum have their own list of rules of this nature.  It may seem easy for those not living on the spectrum to say, “That’s crazy.  You need to control that child.”  And, while I probably would have shared your opinion years ago, I can safely say, it isn’t as easy as that.  Believe me, we work with Joel every day at home to follow some kind of normal routine and when he is at school, he has trained professionals extending that kind of learning.  It will take years and some of these things will be with us possibly all of his life.  He is a work in progress as are we all.

Silver Coins

Every parent touches the rounded belly of pregnancy and wonders about the personality that is going to emerge from that little guy or girl.  We dream about funny things he or she will say, whether they will say mom or dad first, and the sweet moment when they say “I love you” for the first time.

In those parental fantasies, there is no room for Autism.  There is no expectation that those dreams may not come true for that child.  Your baby is born and you count the weeks and months just like you did during the pregnancy.  You watch for the milestones and count them off.  At two weeks, they lift their head for moments at a time.  You can check that off the list.  At about three months, they are rolling over on their own.  Check.  At six months, they are sitting up for moments at a time without support.  Sure, they are really wobbly, but that’s what makes it so cute.  Check.  For some children on the spectrum, there is speech at the appropriate time and then that goes away without any warning.  One day they are chatty, the next they are not.  At least, that is what I’ve heard.  Joel never spoke past babbling.  He met his physical milestones, despite being very small for his age.  Except on very, very rare occasions, he does not speak regularly, nor has he ever.

And, those rare instances didn’t start occuring until he was enrolled in school last year and started working with his school’s speech pathologist on a regular basis.

The first time he really spoke to me was about a year ago.  The message was short, brief and very to-the-point.  I had just finished tidying up the living room and had moved to a different part of the house to do some work.  When I came back into the living room a few minutes after leaving it, Joel had pulled out all of the shoes I had just put away and was arranging them according to his needs, alternating in some blocks and a couple of measuring spoons I’ve given him to keep.  I said, “Joel, I just cleaned this room.” and started moving toward his pile of stuff to put them away when he jumped up, put his hands out and pushed me.  As he did so, he very clearly said, “Don’t!  Go!”  I stood there completely dumbfounded for about a minute mentally rehashing what had just happened and almost pinched myself to see if I was dreaming.  He watched me suspiciously to see what I was going to do next.  All I could do was kiss him and tell him how much I loved him and good job for using his words.  I hate to admit it, but I was almost tempted to recreate the event by trying to interfere with his efforts at arranging, but decided against it on account of us wanting him to know that communicating his needs and desires with us verbally is actually useful.  That we will hear him, listen and take his requests seriously.

The next occurence happened earlier this year while he and I were getting ready to leave to take him to school.  He was dressed and ready and was waiting on me to gather all of my stuff, his stuff, put the dog in his kennel, turn off the lights and all the million other things that have to be done before you can leave the house for a few hours.  Apparently, I wasn’t moving fast enough to meet his needs.  He grabbed my hand as I passed by him and the front door, put my hand on the door knob and said, “Joel Go!”  Again, very brief and to-the-point.  He was letting me know that Joel was ready to go.  Of course, I had to rehash the moment over and over again to make sure I wasn’t crazy.  That I had REALLY heard him say that.

I am currently a full-time student majoring in Psychology so I know just how we humans can and do perceive the environment around us and how our perceptions can interfere with reality.  For starters, we are built to find patterns in everything.  We look up into a sky full of clouds and see robots, flowers, kitty cats, unicorns, etc.  While you can look at a cloud and “see” a coffee mug, the person standing next to you might “see” a shoe instead.  When Joel is babbling away, it is very easy, maybe too easy, for our brains to connect a sound with a word.  Is he just making the sound “ki-ki” is he actually making the word “kitty?”  That is what I might hear, but James might think he is saying something completely different.  It is like a sonic Rorshache test.  Secondly, memories are constructs of our brains.  Over time, our brains can manipulate memories without our even knowing it.  Two people who share a moment, may very well remember two very different events.  When these rare blurbs of speech happen, I want to remember every single detail of the event ranging from what we were wearing, what room we were in, how his voice sounded as the words passed through his lips, and how it made me feel.

It is important to me to remember all the little details, because I really don’t know if and when another moment like it will occur again.  To me, these memories are silver coins I’ve found and gathered.   I keep them stored away in a special bag and every now and then, I pull them out, warm them in my hand and look them over.  I hear his little voice again and count the words.  I put them away and wait for another one.

Last night, I got a new coin.  This one was pure gold.

I was in the kitchen preparing to cook dinner and Joel was being his usual busy self trying to climb up the kitchen counter to get to the drinking cups.  “Joely, what are you doing?”  I asked as I picked him up and held him in my arms.  I was wearing my eye glasses instead of my contact lenses because one of them had been irritating my eye earlier in the day.  He pulled the glasses off my face and carelessly tossed them to the floor.   He was looking at me and I was looking at him and we were having a nice, cuddly moment when he said quite clearly, “Momma…..Ma ma.”  Just like that.  It.Was.Perfect.  I kissed him and told him how much I loved him.  Of course, he was done with all the cuddliness and wanted down.  He went back to his regularly-scheduled quirkiness and I floated about the kitchen and made dinner, playing the moment over and over in my head.  I drew a picture to commemorate the event.  (It’s up to par with my previous drawings, but I never said I was a modern-day DaVinci.)

I know that I have accepted the fact that Joel may never be much of a talker.  Hell, he may never talk at all, beyond these few words here and there, scattered about like rare coins.  But, man, I want him to talk to us.  I’ve not forgotten the parental fantasies from before he was born.  It is a big deal that he called me Mama.  I know this.  But, I want to hear him say I love you.  I want him to tell me what he is thinking and feeling.  If he is sick or hurt, I want to know where he feels bad.  This is not just for me or his dad or the rest of society.  This is for him, too.  I can’t begin to imagine how frustrating it must be for him to live in a verbal world, unable to verbalize.  Our ability to communicate with each other with words and symbols is part of what separates us from the rest of the animals.  Is it really so bad for me to want this for him?  Does it mean I don’t accept him and everything about him?  I don’t think so.  It just means I want the very best for him.  It just means I’m a parent.

The Joys of Transitioning

Wooo, am I glad these last couple of weeks are over!  I have missed blogging, but even moreso, I have missed all of my blogging buddies.  As soon as I wrap up this post, I am going to visit all of your blogs and get caught up on your news.

So, where to begin….

I’m sitting here at my kitchen table looking over the last few days and it is all just a blur of school supplies, to-do lists that multiplied even as I marked things off, various emtional ups and downs, financial/budgetary meetings with Husband, and even a ten-year wedding anniversary thrown in for good measure.  I won’t bore you with all the minutiae as I’m sure it’s not so very different from what was going on in just about every other household across the country whether the children involved were on the spectrum or not.  Pertinent matters it is:

One of my most previous posts centered on how to go about Joel’s haircut.  I spent several days agonizing over an event that lasted only about 20 minutes.  I took into consideration all of the ideas suggested by my contributing readers.  (Thanks again, everyone!!)  I mentioned that I would probably procrastinate, and boy did I ever.  I waited until about 45 minutes before we were expected to attend the Meet the Teacher night.  Yeah, real smart, Shell.  Anyway, after all that consideration, it all boiled down to the four of us (Husband, Maya, Will and myself) working in tandem to keep Joel still while the cutting ensued.  As much as I hated to do it, we had to wrap him up in a blanket like a human burrito while I cut his hair.  It took both Husband and Maya to hold him still.  Will’s job was to hand him chocolate chips and popsickles while we worked.  It wasn’t very elegant, but hey, his hair is shorter.

The Meet the Teacher night went very smoothly.  He sat still while his new teacher walked through the curriculum and answered any questions.  We were all very pleasantly surprised last year at how well Joel fit into the routine of school; granted, he has an occupational therapist, speech pathologist, counselor and a full-time paraprofessional to get him through the day.  The fact that there is a well-defined routine is also a major plus.  Throw in a daily recess period and you’ve got one very happy little guy.

Joel started out last school year in the Pre-K classroom, but was moved up to the Kindergarten class due to a temporary scheduling conflict that occurred one week when his usual paraprofessional was absent for personal reasons.  He did so well in the Kindergarten class that they decided to transition him there for the rest of the school year.  That has worked out even more to his advantage this year as he and his Kindergarten teacher are already familiar with each other.  So, that was a bit of a weight off our minds.

Next, we went to Will’s Meet the Teacher thing at his school, which is within walking distance of Joel’s school.  Again, Joel was quiet and well-behaved and we were able to focus on Will and what was required of him for the year.  He met his teacher, found his desk, I signed papers, etc.

Next, it was time for Maya to check out her school, which was more of a walk than we were prepared to make, so we headed toward the car to go to her school.  Apparently, we did not communicate this clearly enough to Joel who went into instant meltdown mode as we put him into his car seat.  I can only imagine how it looked as we put this screaming child into the car.  People probably thought we were kidnapping the little guy.  This meltdown was pretty bad and I was afraid we weren’t going to be able to calm him so James drove us home.  He and I pulled a still-screaming and very red-faced little Joely out of the backseat and I took him directly out to the backyard.  I know that sounds crazy, but I had a feeling it would work and it did.  I let him just roam around and gather sticks and the few pine cones that are in our yard.  James wound up taking Maya and Will to her school to get her schedule and find her locker while I stayed home with Joel.  As you can see, that was a fun evening.

Yesterday was the kids’ first day of school.  I still haven’t quite understood the logic of starting the first day on a Friday, but that was how it was done.  I was wakened sometime after 5:00 a.m. by Maya who was nervous about her first day and wanted me to help fix her hair.  I slipped on my eye glasses and attempted to make something of her hair with at least one eye open.  When it was completed and she felt it was satisfactory, I went back to bed and slept another hour or so.  I said my goodbye and good luck to Maya who left for her first day of high school.  We got the boys ready.  Joel was especially helpful and even let me brush out his hair.  He was really excited after we dropped Will off and headed toward his school.  His new paraprofessional was waiting outside for him.  This was the really bittersweet moment.  You see, we absolutely loved the PP who worked with him last year and was hoping they would be together again this year, but I guess she only works with Pre-K kiddos.  His new PP has worked with Joel so she isn’t a complete stranger.  We handed her his supplies and he wore his little backpack.  We kissed him goodbye and watched as he walked into the building with her.  And, dammit, I felt that stupid little lump form in my throat and my eyes watered.  I bit my lip and got back into the car.  This was what I had been waiting all summer for, the kids to be back in school, and there I was missing them.  All three of them.  James and I went back home and got into our own cars after a kiss goodbye and went to our separate schools.  I didn’t get to see him again until almost midnight last night when he got off work.

I am happy to report that all three of the kids had a great first day of school.  Maya even enjoyed her first day of high school which seems a bit off to me considering how much I hated my high school experience.  Will managed to avoid trouble which was a relief.  The only flaw in Joel’s day was that he fell down on the playground and scraped his nose.  Everything else went great.  I’m feeling some optimism for the rest of the school year, but I think I’ll keep my fingers crossed just to be on the safe side.

Excuses and Another Movie to Check Out

I’ve been a bad blogger mom these past couple of days on account of back-to-school craziness.  Everyone in my house is going back to school, including me and Husband, so things are hectic.  On top of that, my mom and sister came to visit this past Wednesday and that is always a circus.  Needless to say, I can’t wait for things to settle down a bit once we get into the swing of our old schedule.

Anyway, I just wanted to pop by briefly and post another movie we’ve seen in the past year that features an Autistic character.  In this case, the child with Autism is totally bad ass.  She’s a nonverbal kung fu fighter battling the mafia.  How cool is that?

Here is the trailer.

We found this one a few months ago on Netflix, but I checked to see if it is still there and currently it is unavailable to stream instantly.  The dvd, however, can be purchased on Amazon.com.  It is a lot of fun with lots of action.  If you love a good, raucous kung fu flick and have a child on the spectrum, this is for you.

Calling for Action

I came upon this article  posted on my Facebook wall this evening and, naturally was outraged.  It is a story of a 23-year-old man with Autism who has a life-threatening heart condition.  The only treatment for this uncurable condition is a heart transplant which he has been denied because of his Autism.  Yes, his Autism.  He is not a smoker, nor a drinker.  He has not acquired this disease because of any lifestyle choices he has made.  It is genetic condition he inherited from his father who died from this when he was only 27-years-old.

This is absolutely unacceptable.  To deny him a necessary treatment of this nature because of his Autism is blatant discrimination.

I am posting the link for the petition here.  If you are every bit as appalled by this then please sign it and spread the word.

Wordless Wednesday-ish: The Black Balloon

I was going to write this long review for this fantastic movie, but then I remembered I’m not a movie critic.  I think the trailer will speak for itself.

The Black Balloon.

Let me just say, this movie is the most accurate and heartfelt portrayal of Autism I have seen so far.  Or, maybe I should say this is what Autism looks like in my house.  (If you have Netflix, you can stream it from there.)

the science behind spinning

Before Joel was diagnosed with Autism, we were often mystified by his behavior.  Why was he spinning all the time?  Why was he flapping his hands?  Why was he walking on his toes?  None of it really made much sense.  Of course, some of it was explainable.  Kids like to spin and move around a lot.  When I was a child, I liked to spin and cavort.  Granted, I had a threshold where I would become dizzy and fall down.  Joel, on the other hand, can spin and spin and it seems as though he never finds that threshold.

Now we know why Joel spins and flaps his hands and walks on his toes.  When he does these particular activities, his brain receives a level of stimuation required to keep him comfortable so that he can better focus on, and relate to, the environment around him.  We know this through scientific investigation, testing and research.  Here in our household we strongly support the scientific method to explain all of life’s mysteries.  It is a simple, yet sophisticated system that has given humankind the combustible engine, telephones, space travel and the discovery of the Higgs Boson.

Having said that, I do also have a love for whimsical notions.  I found this as a meme on Facebook last night while I was wasting time and it made me think of Joel and how he spins:

There are some days when it is fun to believe that maybe, just maybe, Joel is really on a mission to travel through time.  It’s really not all that hard to believe.  After all, there is speculation that Albert Einstein and Sir Isaac Newton had Autism.  Take that information and add it to what Solodialogue posted recently on her blog about a possible connection between Autism and Evolution, and it really isn’t so hard to believe the amazing things people with Autism are, or could be, capable of.

Joel is limited every day by his own disability or by us in that we stop him from doing many things that he enjoys that are extremely dangerous.  Because of that, I don’t want to place limits on his potential or make grand statements like “He’ll never be able to do this or enjoy that.”  The boy is only five years old.  We have no idea just what he will be able to do in five more years, or ten or twenty.

(BTW, this meme is from a comic called xkcd which is now one of my new favorite things.)

Lord of the Fries: Our Afternoon Adventure at the McDonald’s Indoor Playhouse

You know that scene in Lord of the Rings when the Fellowship is being formed at Elf Central and they are discussing how to destroy the ring and Boromir says with his hand on his forehead like he’s talking to morons, “One does not simply walk into Mordor and destroy the ring.” ? I felt a little like Boromir yesterday as our family was getting rounded up to make a shopping trip in Tulsa and was informed that Husband and older son, Will, had made plans for us all to go to McDonald’s to play on their indoor playground.  My first reaction was “Um, no, Joel will have a huge meltdown when we leave and it will be a huge disaster.”  When you have a child with Autism and sensory issues, one does not “just go” to McDonalds for a little recreational playtime.

I thought we were decided on the issue, but as our trip progressed I could see that Husband didn’t quite want to give up on the idea.  After all, Joel would have a great time while he was playing and he isn’t overwhelmed by strangers or loud sounds.  It is also a recommended therapy for proprioceptive input.  The only thing we had to worry about was an exit strategy.  So, I said, “What the hell?  Let’s give it a try.”

We finished our shopping trip and located a McDonalds that also had an indoor playground.  Before exiting the car, we took a moment to find some mental clarity and worked out a plan.  James would go to the line and order us some french fries and ice cream while Maya, Will and I would go straight to the playground area.  Maya and I changed Joel’s pull-up in the family bathroom, washed his hands, removed his shoes and set him free to roam.  He took to that thing like a pro.  He climbed and slid down the slide and had a blast.  The other children ran around him and he barely paid them any mind.  He just did his thing.

Will, on the other hand, struck up a bit of friendship with a few vey rowdy boys his own age, whose parents/guardians seemed to be nowhere in sight.  It turned into a bit of a Lord of the Flies scenario and at one point, I could have sworn I heard someone shout, “Kill the pig!” but that was probably just my sometimes-overactive imagination at work.  Will was quite the protective brother and at one point, Husband and I overheard this exchange between him and one of the other boys:

Will: Hey, be careful of my little brother.  He is Autistic.

Other Boy: Yeah,my little brother is a little like that, too.

Husband and I got a little smile out of that.  Meanwhile, Joel came out on a couple of occassions to inspect the world “outside”.  He did try to get a little friendly with another family who was eating.  I pulled him away before he could grab anything and apologized.  The mom just smiled and said it wasn’t a problem.  I brought him back to our table and he sat down with James and ate some french fries and watched a video on his IPad.  We decided that that was probably a good time to try leaving the playground and we geared ourselves up for a meltdown.

James picked Joel up and carried him out the door to the car.  Maya and I gathered up our things and Joel’s shoes and we met up with Husband at the car.  Joel not only got into the car seat without a hitch, he even helped James buckle him up and gave him a kiss before James closed the door and got into the driver’s seat.  We completely avoided a meltdown…

…until we got home.  We pulled into the driveway of our house, Joel realized we were home and our trip was over and he began to cry.  His crying became a meltdown.

Once inside, James and I tried using weighted items to calm him.  That didn’t work.  We ran him a bath and he slowly started to calm down.  Then, Husband had the most brilliant idea yet.  He pulled out a can of cheap shaving cream and sprayed some on the shower wall.  Joel immediately stopped crying and was fascinated.  He squooshed it in his hands and had a blast.  James squeezed some directly onto Joel’s palm and Joel made it float on the water.  After that, the meltdown was over.

So, I’ve come away from this with a little perspective.  Sometimes, you have to take chances no matter what the expected outcome may be.  You just may be very pleasantly surprised.  I’m expecting we will be making this a regular-ish activity for our family, especially while the temperatures are as extreme as they are now.  (Temperatures in the 100’s here in our neck of the plains!)  I will also work on trusting others when they have an idea that I may think is crazy.  And, last but not least, I will be making sure we are fully stocked up on cheap shaving cream!

A Rather “Weighty” Topic

Look at me getting “punny” this morning.  Yep, I’m a dork.  If you think that was an embarrasing attempt at humor, please, keep reading.

This morning, I was standing in the kitchen with Husband and Maya making a cup of coffee (for the record, the Keurig thing is still MIA.)  when Joel came running into the kitchen mildly distressed.  We comforted him briefly, then he ran back to the living room and got quiet again.  I finished making my cup and wandered into the living room to make sure he was okay.  This is what I saw:

I made Husband and Maya come look.  We “oohed and awwed” his adorableness and then I announced I would be researching weighted blankets today.  Fun Fun.

First, I looked into purchasing one.  I found one website with some great information.  Actually, just looking at this site made me realize that this isn’t as simple as picking out a new toaster.  I also realized it is a lot more costly than a new toaster as well.  They do have some information about insurance, but unfortunately, my brain turns into pure mush when I read about topics like insurance, or real estate, or investment banking, etc.  I have thus relegated the insurance stuff to Husband whose brain is way less “mushy” in that regard.  (I’ll inform him as soon as he gets home, haha.)

Then I figured, “Hey, I’m pretty smart.  I can make a weighted blanket!”  So, I googled How to make a weighted blanket and found this really great blog with directions.  Of course, I actually read the directions and looked at the photos and came to my senses.  Seriously, I can barely even thread a needle.  I don’t even own a sewing machine.  I took Home Ec WAY back in the day and everyday class was over I was just thrilled I hadn’t set my little cooking station on fire or sewn my fingers together.  I have gotten better in the kitchen, but sewing and I have never reconciled our differences.

So, I’m back to the original idea of buying a weighted blanket or possibly having one made by an actual sewing professional.  I still need to measure Joel by size (wish me luck getting him to hold still while I pull out the tape measure!) and figure out how much weight is just right to make him comfortable.  I’m thinking we should probably also talk it over with his OT and get her opinion.  She did try a weighted vest on him during the school year, but he didn’t seem to like it.  He does, however, love blankets and being wrapped up in them, sometimes.  If anyone reading this has any experience with weighted blankets, I would appreciate your insight into them.

Loving Loving Lampposts

I feel I really need to “give a shout out” to what was quite literally a life-changing documentary for my family, Loving Lampposts.

First, let me give a brief history about life before we watched it.  On a physical developmental level Joel seemed to be moving along at a rate that was appropriate.  Medically, he has always been very healthy.  He’s never experiened any instances with seizure activity, allergies to foods or other environmental agents, or any of the stomach/intestinal problems that strike some children with Autism.  He also did not respond negatively to any of his vaccinations, other than not liking the process of getting the shots, of course.  Behaviorally, he was almost always pretty easy going, he smiles and laughs and plays with toys, etc.  He is very affectionate with us and always has been.  In these areas, there never was a cause for concern.

However, there were other behaviors he exhibited that were highly unusual.  Joel has only ever spoken a few words in the five years since his birth, but he isn’t silent by any means.  He squeals, hums, blirts out sounds like “gah” or “choo choo,” clicks his tongue and other kinds of noises.  At first, we didn’t really worry too much about the delay in speech because Will was a late bloomer verbally and now we cannot get him to stop talking.  Ever.  There were times, and Joel still does this every now and then, when he would be sitting by himself not interacting with anyone and start laughing as though he had just seen or heard the funniest thing.  I am talking about full on belly-laugh giggling.  We didn’t really know what to make of it and certainly didn’t think there could be anything “wrong” with a child laughing, right?  Who starts to worry when their child laughs?  I remember one time I did sit down to my computer and googled “child laughing for no reason” and one of the things that popped up was Autism-related.  I quickly closed my eyes to that because Joel didn’t have Autism.  I mean, you saw the previous paragraph, right?  There were no Rainman signs or symptoms in Joel, so, that was just ridiculous.  Another thing about Joel is the constant stimming.  He flaps his hands, he spins, he walks around on his tiptoes, he “dances,” etc.  I mean, from the time he wakes up in the morning to the time he goes to bed, he is in near constant motion.  It sometimes makes me dizzy.  When Joel isn’t moving, he is occupied with something.  I’ve mentioned on this blog several times his fascination for shiny things and anything that can be ripped, torn or shredded.  He loves my cooking utensils.  We have had to put child safety locks on all the kitchen drawers to prevent him from pullng everything out.  On occassion, I will purchase measuring cups, slotted spoons, strainers and similar items and he is every bit as excited about these “toys” as Will is about his Legos, action heroes, and toy cars.

Even with all of these behaviors, or “quirks” as we called them, we were still in a state of denial about the situation.  We always expected that he would “snap out of it” and start speaking and “normalize.”  What can I say, denial ain’t just a river in Egypt.

One night about a year ago I was the only one awake and decided to watch something on Netflix.  I was flipping through the New Releases and found Loving Lampposts and thought it would be pretty interesting because I’m a psychology major and that was right up my alley.  I think there was also a tiny part of me that wanted to watch on a more personal level, but that was a very small part.  After all, Joel DID NOT have Autism.

You can find the trailer here.

I got through the first 20 minutes or so into the movie and was enjoying it in a pretty detached manner.  None of it really pertained to me or our household.  I didn’t recognize any parallels to my own life until the audience was introduced to an Autistic adult who works with Autistic children by teaching them through music.  My true epiphany, and I’m not being dramatic, that is what it was, came when we, the audience, see him interacting with a little boy who has Autism.  This little boy was smiling, squealing and stimming exactly the way Joel does.  It felt like I had been knocked over the head when I saw that.  I remember thinking, “Oh my gosh, THAT is Joel.”  I watched the rest of the movie thunderstruck.  I didn’t wake Husband when I went to bed.  I just worked things over in my mind.  In the morning, I had him, Maya and Will sit down and we all watched it together.  From then on, we have made Autism Awareness our number one priority.  Not just for the community, but for ourselves.  I cannot tell you how much time I have spent reading and researching everything on this subject and I am just getting started.

One of the things I appreciated the most about Loving Lampposts is the attention given to how Autism is viewed by the public as well as by those who are actually affected by it.  They emphasize the point that you can either be on a mission to cure or “defeat” Autism or you can accept the diagnosis and embrace what makes these children and adults so special and unique.  Husband and I decided to take the “acceptance route.”  We are not on a mission to find a cure, nor do we expect there to be one in our lifetime.  If we are wrong and a cure is found, then we would carefully weigh our options.  If Joel is able to have a say in it, we would let the decision be his to make.  It is our job as parents to support our children emotionally, physically and mentally as much we can.

This does not mean we reserve any kind of negative judgement toward other Autism parents who do hope to find a cure.  Everyone handles this diagnosis differently and making the choice to accept or defeat is just part and parcel of moving forward.  After all, forward motion is just what is needed to help spread awareness.

As for our extended denial, I will always regret this.  We were aware that something was going on, but we let our fears cloud our judgement.  Sure, we are making great strides with Joel now, but we have lost some valuable time.  That is why this blog is so important to us.  If our story can in any way affect the outcome of another child, then it might not have been in vain.