This is What our Autism Looks Like

If you were to line 50 children up that were diagnosed with Autism, you would see 50 very different characteristics and behaviors.  Some children would be very apparently autistic, while others would appear "normal".  The autism spectrum reaches wide in both directions.  It is often misdiagnosed.  It is also over-diagnosed.  It also gets used to diagnose children whose behaviors and symptoms don't seem to "fit" in any other category.  Whatever your beliefs are about autism, I believe it to be real and I know that it simply sucks.  It's hard on the family who lives day in and day out with the son or brother with autism.  It is difficult for teachers to "reach" students with autism, never knowing what kind of mood the child is in, what kind of morning the student had before arriving to school, or whether or not the student is still fixated on something that happened 2 weeks ago but he just can't let it go.  The Sunday school teacher works harder and prays fervently hoping that her message reaches and penetrates your sons heart.  But how can you know that he is receiving the message when your son seems to be void of emotion?

A few weeks ago, our son Oliver, was diagnosed with Autism.  I have known he was autistic from the time he was so small, but nobody would listen.  Even when he was just a little guy and still our foster son, I took him to the pediatrician.  I was told he was just a "spirited" child and that I simply "didn't know how to handle that type of child and I should re-consider fostering."  In the foster care system, if you actually do your job and advocate for the child, you risk them being removed from your home and sent to a home where the parents are quiet.  We loved Oliver and I didn't want to take that risk.  So, I quietly loved him, nurtured him, and cared for him.  I did all of this while constantly worrying about him.  There was a part of me that hung on to what the doctor said.  Maybe he is just spirited and he will grow out of it.

Adoption Day

But he didn't.  When he had just turned 5, I took him to a therapist and she conducted an evaluation that took many hours over the course of several weeks.  It was at that time that he was diagnosed with ADHD and anxiety.  Duh.  I knew he had to be ADHD because he spent most of the first few months of Kindergarten standing on his head!  She also warned me that because of his young age, there may be other issues present but not able to be diagnosed then.  Still, no autism.  But, I felt a little bit better and somewhat vindicated.  He would now get some help so he could focus in the classroom and be a little less nervous.  Again, I convinced myself that once he could calm down, he would grow out of it.

But it didn't.  Forward to now.  He is 10 years old.  Full of energy, curiosity, creativity, and spunk.  However, he is also plagued with fear, fixations, awful short term memory, impatience, and intolerance.  Now that Oliver has entered the fourth grade, it is as though he has hit a wall.  Sure.   He has always struggled socially.  Reading comprehension that required him to make inferences were always difficult.  But this year everything was harder.  Re-directing his fixations, academics, social situations, family life, being more tolerant......EVERYTHING was harder.  And although he was in therapy and medications were being adjusted, Oliver was still struggling in a big way.  We were searching for anything to be a success for Oliver.  A child can only feel defeated for so long before he gives up entirely.  I feared that more than anything.  As parents, Bruce and I were searching big and wide to help Oliver feel proud of himself.  At the suggestion of the therapist, we had Oliver re-evaluated.  It is suggested that children who suffer from the kinds of diagnosis that Oliver does, it is wise to have these evaluations conducted periodically.  Especially when the behaviors seem to be more intense as time goes on.  It was during this recent evaluation that the ADHD and anxiety was confirmed.  But now, also autism was diagnosed.  And while I was not surprised by this, I was still deeply saddened.  Because, my fear was realized and now I had so many more questions.  But oddly enough, I couldn't think of a single question.  I was numb....and scared.  I left her office with a 36 page report describing my Oliver and why he was diagnosed with autism, and still, my brain was mush.

I have had time to let this sink in and formulate some thoughts and plans.  This diagnosis doesn't really change anything.  Oliver is still Oliver.  And we still love him.  But now, perhaps is explains a little bit of his behavior.  He's not a "brat".  He's not a "bad" kid.  He's not "spoiled".  He's not "crazy".  You can put whatever label on him that you want, but at the end of the day, he's Oliver.  And yes, he happens to wake up each day with struggles that aren't his fault.  But don't we all have struggles?  But he has a family that loves him and will do absolutely anything to help him be the best Oliver he can be.  But don't we as parents, do that anyway for all our children?  I can now embrace this diagnosis and move on.  One day soon, we will explain this lovingly to Oliver.  Maybe it will answer some of his questions about why he feels different.  I am thankful to live in a school district that is ready and has the resources available to help my Oliver.

One of the big struggles that Oliver faced was sharing a bedroom with his brother Carter.  We have enough bedrooms for each of our sons to have their own room, but Carter didn't want to be alone.  Carter still gets scared being alone. He likes the lights on while he sleeps.  Oliver likes it very dark.  Carter likes a fan on no matter if it is winter.  Oliver likes it super warm.  Carter wakes up extremely early.  And although he tries hard, Carter just can not contain his noise and happiness in the mornings.  He wakes up singing.  Even his smiling seems to be loud in Oliver's opinion.  It doesn't help that Oliver is very sensitive to noise, movement, and light.  Carter doesn't even stand a chance.  I can not even begin to tell you how many times I have heard Oliver scream out "Stop being happy" or "You are so annoying" or "Mom, make Carter stop being happy".  Therefore, my husband in all his wisdom, came up with the awesome idea of building a partition in their bedroom that would separate them while still sharing a bedroom.  It was his hope that both boys would be happy with this arrangement and allow Oliver to sleep more peacefully and sleep in on the weekends.   I was envisioning a simple wall.  But for anyone who knows Bruce, you know that he goes over and beyond with anything that he does.  He loves his children immensely and he works tirelessly to provide for their needs and pour himself into them.  This wall quickly turned into a bed hutch, a desk, and a set of shelves and cubbies for both Carter and Oliver.  Their rooms are small now that the partition has been built.  But each of them has their own space now and I am happy to report that this was a total success.  Oliver is so much happier now and has his room warm, dark, and quiet.  Carter is also thrilled with the arrangement.  He has the closet light, a night light, and Star Wars lights hanging on his side, the fan blowing in his face, and his noise doesn't effect Oliver in the mornings.  The partition is 6 feet tall, 8 feet long, and 3 feet wide.  Bruce put a lot of love and labor in this project, and it was a complete success.  Bruce's next project is to make a dedicated homework station just for Ollie.  You see, there's not much Bruce wouldn't do for his kids.  (He's good to me too.  On this list of his projects is making me an upgraded craft area).

Oliver's Spider-Man room

Carter's Batman Room

Our autism looks different each day.  But there are some things that are always present.  While Oliver sees even the smallest detail, he misses the big picture.  He can tell you about characters in a book but can't tell you why the main character is sad.  He doesn't understand facial expressions or the feelings and emotions that cause those expressions.  He can remember how to build a Lego project without the instructions, but can't remember sometimes how to put on a shirt.  He gets stuck on a topic and nothing else will penetrate his brain until he has told you every fact he knows about a T-Rex.  He can be moody.  He can be intolerant of others.  His logic makes no sense to me.  Eye contact is rare.  Any noise can set him off.  Shirts with collars or tags will paralyze him.  But I know that Oliver was perfectly and lovingly made by God and there is a plan for his life.  I also know that Oliver is supposed to be in our family.  We love him fiercely. 

Christmas Just Wasn't the Same this Year....but it was Better

Decorating a Christmas tree is a common tradition celebrated by many families each year.  Maybe your family enjoys picking out a new fresh tree each year.  Just the right one that suits your taste.  Or maybe you have an artificial tree that you love.  But in the end, decorating your tree is a time when families come together and bring out the ornaments and other decorations that are full of memories and stories.  Some ornaments, perhaps, are those precious ones that your children made in kindergarten.  Maybe you have a special ornament from a favorite trip that you saved for years to afford.  Possibly there is a favorite ornament from your own childhood that has been with you for 44 years.  Maybe you do a theme tree where everything matches and the tree looks sophisticated.  Or maybe, like our tree, it is a hodgepodge of ornaments but are still full of memories that you like to re-visit each year when decorating the tree.  The same stories get told every year, but they are still never boring and still just as dear to you as the previous year.  I love pulling out the ornaments and reminiscing about the stories attached to each one.  I have an ornament that Beau's mom gave me when we were first married.  Inside the ornament is a precious picture of a young Beau during Christmas.  We also have several Star Wars ornaments, of course. 

The boys new Star Wars ornaments this year, in celebration of "The Last Jedi"

However, some of the Star Wars ornaments were given to us as gifts from Beau's mom many years ago.  And inside each box is a hand written note from her which I love to read each year.  She had a gift for always knowing just the right words to say or write.  We have some ornaments that are actually frames and have pictures of family members that we have lost over the years.  We have an ornament of each child's first Christmas and one that signifies our first "married" Christmas.  Oh how I love to reminisce about our first years of married life.  We have ornaments from trips we have taken.  Some of my favorite ornaments are those where the names of our family are written in.  We have a family of moose, another with a family enjoying a snowball fight, one with a tree full of little monkeys, another with a family in a sled, etc. You get the picture.  Among my favorite ornaments, however, are the ones that are Hallmark's light and sound ornaments.  We usually buy one each season to add to our collection.  Each one is so detailed and the kids love to watch and hear them.  

This year, we decided to use our old trusted and convenient artificial tree with the classic soft white lights already attached.  So, Beau and I lugged that heavy box up from the basement and assembled the tree in the designated corner of the living room.  The corner just appropriately positioned in front of the window for all to see.  Of course, the first thing we check before decorating is the lights.  The bottom 2 sections came on beautifully, however, the top section did not.  Beau worked with it for a while to no avail.  Rather than spend too much time trying to find the problem, he suggested we would just add our own lights.  Knowing that what he really meant was for ME to go out and purchase new lights, I quickly came up with what I thought was a perfect solution. I suggested we use the "beautiful blue lights" that we already owned.   I was just so sure that I could find the lights in the basement faster and easier than run out to the store in the cold and snowy weather.  At this point, he explained that those blue lights were outdoor LED lights and would be way too bright inside.  Still, I didn't want to leave the house.  After all, I was in my pjs and settled in for the evening.  So, he gave in, but by this point, it was too late to find the lights and string the tree.  So, the poor unlit tree sat there, still unruffled.  All the branches were still sticking straight up in their "housed in a box for a year since last Christmas" position.

For the next 10 days, yes, 10 days, the tree sat pitifully in it's unruffled state and still without lights.  I am not sure if it was a stubbornness issue or a laziness issue.  If I had to guess, I would say that both of those crept in.  I kept asking when Beau was going to put lights on the tree and he kept saying he couldn't place the lights until I had fluffed the tree.  However, neither one of us was getting our "job" completed.  All during this time, I decorated the fireplace mantle, the dining room buffet, and the foyer table, and made our Christmas cards.....all while just working around the tree.

Our Christmas Card this year

Finally, I gave in and fluffed the silly tree.  Even after the tree was fluffed and full looking, it was without lights for another several days.  I lost count.  But I had fulfilled my "job" and I was then just waiting on Beau.  The boys would come home from school anxiously looking at the tree to see if the lights were on.  They knew we couldn't decorate until the lights were on.  Finally, the glorious day arrived.  I had gone to the grocery store and came home to find lights on the tree.  Well, actually, I saw the lights from what seemed like a mile away.  Beau was right.  They were BRIGHT and they were BLUE.  We could have used them as a beacon for a ship in the night or to land a plane.  They were ridiculous.  But I was NOT going to complain.  I was able to muster up a seemingly sincere compliment and a thank you for getting them done.    The kids loved them and thought they were just beautiful.  Each morning, Carter who gets up early anyway, would turn on the Christmas lights first thing.  I am sure we woke the neighbors!!!  One day, Zander, finally getting out of bed around noon, stumbled into the living room and actually screamed out in pain, "My eyes, my eyes!  Turn that thing off!"  Even the sunshine beaming into the room was pale in comparison to the blue lights.

Next, we needed to decorate the tree.  The box or ornaments sat in the living room for another few days.  However, nobody seemed to show any interest in decorating this year.  Their enthusiasm for decorating had waned.  One Saturday morning, while Beau and I were still laying in bed, the boys were "wrestling" in the living room.  We heard a loud crash and broken glass.  I had a crystal vase filled with ornament balls on the end table that someones leg knocked to the ground.  (Those shatterproof ornaments truly do not break, but that crystal vase was shattered into a million pieces).  It was then and there that I decided I was not going to hang any of our "nice" ornaments on the tree.  I didn't want them broken like that beautiful vase!  So, I decided I would decorate the tree myself since no one else wanted to help me.  No light and motion ornaments went on the tree.  None of the Hallmark Illuminations went on the tree.  I couldn't reach the top, so no star or angel adorned the peak.  (I decorated the tree with the lights off...no need going blind in the process).  So there my pitiful, ugly tree sat with blindingly bright blue lights, no topper, and minimal decorations.  As I was sitting in the chair one morning trying to decide whether to take the tree down or just live with it (after all, Christmas was just days away at this point), I got a knock at the door.  The mailman was there to deliver a package.  I knew it had to be something fun because we had already received all the Amazon packages we were expecting for the kids so this was an unexpected package and it came from my friend Cami.  Needing a little joy, I immediately opened the package and to my surprise, she sent me a beautiful ornament with our family's name on it penned in her beautiful calligraphy.  God is so funny and he indulges us when we sometimes need it the most.  Oh, the irony of this sweet ornament.  I cried.  I mean ugly crying.  It was the only beautiful ornament that made it to our tree this year.

Somehow, my tree was a little less ugly with this ornament hanging on it.  It made me smile.  Suddenly, I was able to laugh at the situation that was our tree.  In fact, the tree suited us.  The Bennett clan never seems to do things the normal way.  But it is OUR way.  I really wished that I had taken a picture of our tree this year.  But the lights would probably have broken the lens.  Ha.

Our tree may have been "special" this year.  Nobody wanted to help decorate this year.  I may have been a little gloomy this year.  But one very special thing happened this year and it will forever change the course of Carter's life.  It was during this holiday season, that he accepted Christ as his Lord and Savior.  We have been seeing some significant changes over the last year.  His heart has grown soft and compassionate toward others.  He has a very deep moral compass and he listens to it as it guides him.  He has become the peace keeper among his brothers.  He has a love for Christ and a faith that I can only describe as a passion.  His prayers have changed.  His desires have changed.  So, what if our Christmas was a little different?  It's just a tree!!  Trees will come and go.  But Carter's life is now eternal.  That is what we really celebrated this year.  My heart is full.