Why?

I won’t lie, friends…I’m not in a great place this evening.  I’ve been doing a lot of reading and thinking about what our next steps with Ben should be.  ABA therapy.  Social Groups.  Occupational Therapy.  There are so many successfully proven interventions that exist in our world, created and implemented by wonderfully brilliant and compassionate people.  I have no doubt in my mind that taking these steps will only enhance Ben’s life experience as he progresses through school and into adulthood.  I welcome the opportunity to introduce him to the advances in Autism Spectrum treatments.  For him and for our family these are good things…things to be thankful for.  And while I am appreciative to be where we are now, there is this biting at my heart.  The bitter taste on the back of my tongue...residue from missed early opportunities.  It's a nerve that won’t calm.  A flame that has singed my soul and continues to burn.  And what I keep coming back to is the “why”.

Why? 

·         Why are people FINALLY seeing Ben?  Why now?

·         Why didn’t they see him when his father and I knew he had a speech delay?

·         Why didn’t they see him when he was extremely physically reactive at a very young age?

·         Why didn’t they see him when he wouldn’t respond to his name?

·         Why didn’t they see him when he was constantly running away?

·         Why didn’t they see him when he appeared to feel no pain or show any fear?

·         Why didn’t they see him when we told them he couldn’t overcome changes in his life?

·         Why didn’t they see him when we said he can’t handle loud noises?

·         Why didn’t they seem him when we swore the slightest drop of water on a dry shirt could send him into a meltdown like no other?

·         Why didn’t they see him when we said he’s not making any friends?

·         Why didn’t they see him when I told them he’s not enjoying school?

·         Why didn’t they see him when the teacher said he’s extremely emotionally reactive to classroom transition? 

·         Why didn’t they see him when I asked them to evaluate him for Autism?

  

For two years I knew.  For two years I let doctors, psychologists, psychiatrists guess.  I let them put him on medication.  No therapy.  No real help.  Two years of negative feedback in school.  Two years of my Ben thinking that everyone hates him.  Two years of him believing he is a failure.  Two years of thinking he is a bad kid.  I let that happen.  Because I believed the doctors when they said:

Ø  He’s just a boy…boys are more aggressive.

Ø  Must be the ear infections…that’s why he’s not talking or responding as much as he should.

Ø  Maybe he’s depressed.

Ø  He probably has Oppositional Defiance but it’s really too soon to tell.

Ø  If he was Autistic he wouldn’t be making eye contact. 

Ø  He’s grieving because of the loss of his Papaw.

Ø  Ben’s just a perfectionist.

Ø  He’s defiant and his classmates are scared of him.

Ø  If he was Autistic he wouldn’t be as verbal as he is now. 

Ø  He’s stubborn.

Ø  He’s like his mother.

Ø  He’s like his Papaw.

The last two points I can attest to be true.   I can’t be mad at those comparisons/explanations/excuses, rather I am proud.   He certainly does match my determination and tenacity to the ends of the earth…or my patience.  Whichever comes first.  And to compare Ben to the great man that was my father-in-law is nothing short of an honor.   I can only hope to raise Ben to be the man his papaw was. 

To the practitioners we have interacted with over the last two years…who have fed us the remaining excuses on my list above…I say, “screw you”.  Have you not heard me?  When I told you about each one of these things they weren’t in seclusion.  They were in addition to every other thing on this list.  Can YOU not put puzzles together?  Do you not understand Autism?   Is it THAT hard to simply suggest we have him evaluated?  Assessing him for eight hours for everything else under the sun BUT Autism made sense to you? 

Instead we’ve wasted two years on a rabbit trail only to land where I knew we were in the first place.  In those two years my son’s self-esteem has plummeted.  In those two years I have blamed myself for every parenting mistake in the book.  I spanked, grounded, yelled, segregated, ignored.  I let his principal paddle him.  To this day the thought makes me bawl.  I can only imagine the thoughts going through my boy’s mind…the pain in his heart…when he received those swats.  I gave the green light.  I was willing to try anything and everything to make him “right”.  To make him “better”.   God damn it.   

I do realize we’re making the right moves now and that is what is important.  I realize I should be thankful that we DO have answers and we HAVE met a wonderful doctor who DOES see Ben.  But I’m wallowing right now…I'm allowed.  And the tissue box is running low.  I have to release the venom if I’m ever to move forward.  If I’m ever to forgive myself.  I have to.  And I will. 

 

Hope Swims

I won’t lie, the kids being out of school the last couple of weeks has been a relief.  For me as much as for them, of that I am sure.  Two weeks of NOT thinking about assessments, modifications, IEPs, classroom consequences…two weeks of NOT watching my phone, just to see the school’s number pop up on my screen.  A couple of months ago I began soaking up any and all things Autism, ASD, Asperger’s that I could get my hands on.  Blogs, Facebook pages, articles…you name it, I was reading it.  I was empathizing.  I was inheriting the fear and frustration of others.  I didn’t realize the emotional toll it was taking on me at first but eventually I had to back off.  I had to clear my mind.  I had to breathe.  While I’m so very thankful for the connections and resources I’ve built and gathered as of late, I realize it was dominating my thoughts, my world. 

When the kids walked in the door on the afternoon of the last day of school I took that as my cue to rest.  Nothing is critical.  This isn’t going away.  It will all be there when I open my eyes tomorrow.   But can I figuratively walk away for a little while?  Just pretend that there is no such thing as Asperger’s for a week or two…or four?  Imagine that next school-year is a non-issue?   I didn’t wait for myself to answer.  I took that mental break.  And it felt good. 

During the last few weeks of school, I was fortunate to be referred to an Autism sports camp in my area by a good friend.  I was thrilled…an opportunity to potentially introduce Ben to other kids who might just “get” him.   No one saying he’s weird.  Or a freak.   A place where he can just be Ben…not Libby’s little brother who requires her protection.  Or Timmy’s younger brother who is constantly getting into his stuff.  Just Ben.  We registered and awaited confirmation that he would indeed be allowed to participate.  I was thrilled to discover that Ben was in but would need to attend an assessment session with the other campers to determine what and how many resources they may need to administer the camp.  Great!  We’ll be there! 

Weeks had passed and I was well into my mental “break”, my Asperger’s time-out, before his assessment rolled around.  The bright red beacon that is my calendar reminder acted as smelling salts beneath my nose.  Yep…it’s time to start thinking about it again.  No more pretending.  It was nice while it lasted.  I wouldn’t say it caused anxiety, rather I did feel some sense of progression, movement, maybe I’ll actually feel like we’re getting somewhere.  We both need this.  We were scheduled to meet with the group Saturday afternoon…given the heat and the length of the session we opted to split kid duty and allow Lib and Timmy to stay home with the Gentleman.  I was on Ben-duty.  Works for me…I readily admit I require being the one in control of all things “Ben”.  Not necessarily healthy, but it’s a fact. 

We arrived at the house, pulled in to park and were pleasantly greeted at the door by a wonderful young lady.  The home appeared to be set up as a daycare/therapy facility.  We signed in, Ben chose his nametag and was escorted outside with the other children as I completed our paperwork.   My anxiety skyrocketed and I could feel the muscles in my hand weaken as he left my sight.  My “what if’s” were abound and I couldn’t sign my name fast enough to follow him out.  I was advised I could either sit inside and watch him through the picture-window, or I could join some of the other parents outside to watch from the patio.  Social anxiety could kiss my ass on this one.  I’m sitting outside WITH the moms.  And they’re going to talk to me. 

I had no idea what to expect when I walked out to the yard.  I think a part of me considered and maybe hoped in some twisted way that the leader would suggest that Ben isn’t quite “Asperger’s” enough to participate in this camp.  When you go through years of not knowing what is going on with your child, and are faced with others’ assumptions that you’re just parenting wrong, or he’s oppositional, or he just needs medication…you can’t help but imagine that maybe, just maybe this is in your head.  For that split second before my butt hit the chair, and my eyes set on the kids, I thought “what if he doesn’t have Asperger’s?”

And then I watched.  And watched some more.  After a kind but perfunctory introduction by one of the other moms I sat silently…monitoring his every move.  Of the twelve or so children participating in the assessment he was one of the least social of them all.  He didn’t speak to anyone.  He didn’t initiate play.  He didn’t engage.  Not one bit.  He melted down at one point because of his name tag and the heat.  Thanks to one of the wonderful ladies leading the session he regrouped and joined in on the activity.  Turns out we weren’t going to get that “thanks but no thanks” response after all.  And while I tried to swallow the validation I was receiving before my eyes, I tried my hardest to see that this was THE best thing I could involve Ben in at this very moment.  Once I swallowed that pesky softball once again lodged in my throat, I started to focus on how I could support and enrich this opportunity for him.  The moms…time to engage, myself.  The vacuum-esque echo of their voices as they chattered about schools, therapies, medications, social groups soon came alive and I was suddenly hearing every word.  Every overwhelming word.  They were swimming…no, drowning in my head.  What does it all mean?  What is ABA?  What is bio-med?  Did she just say 15 IEP meetings so far for a child who is only 7?  Three schools in two years?  Intestinal lesions?  Casein-free?  What IS casein?  Should I be doing these things already?  Have I caused harm by not having done so? 

So I started talking…and listening…and talking some more.  It helped.  I told them I was “new” at this.  And they understood.  They welcomed me, so to speak.  I gleaned more from these moms in an hour that I did from a month of reading.  I felt validated.  In telling Ben’s story to one mom, she smiled and sweetly said “we’re their moms, we always know.”   By the time we left, I may have kissed good-bye the notion that absolutely nothing is wrong with Ben.  But in doing so, I gained some friends.  Ben was invited to a birthday party.  A BIRTHDAY PARTY!!!  I now know what ABA is…and have social groups at my fingertips.  We’re going to get there. 

For a moment I felt as though I was at a swim meet…walking backward into the pool…falling mid-way into a lane where a team was already swimming a 800 meter freestyle.  Fast.  No diving block to leap from…no wall to push off of.  Just. Start. Swimming. 

Toss me my goggles…I’ve got this. 

 

Heartburn

Kids in Unison - “Hey, Mom!  We got invited to a church pool party for Thursday night!  With the other VBS kids!  Daddy said you can take us!”

Chicken-shit Me - “Uh…well, are you sure you wanna…I mean…it might be too chilly.  How about we just wait and go to the pool this weekend, or…I don’t know if…let me talk to your dad.”

Why is this my response to such potentially fun-filled events?  Every. Time.  As I stuttered through my response to the kids I could feel my throat tighten and my stomach gurgle.  There will be other parents there…other moms, in particular.  We aren’t members of this church.  I know it’s a community pool but is it big?  Small?  Is the deck spread out enough that I can find a quiet place to watch the kids?  When I really think about the anxiety coursing through my mind, it truly makes no sense.  I AM a social person…as I’ve shared before I actually have an intense fear of being alone.  I suppose that my need for company requires that I have complete control over who said company consists of.   

As a mother to three kids I’ve had my share of parent events…some including the children, some not.  Teacher open-houses…concerts…sports end-of-season parties…award ceremonies…play groups…birthday parties.    They all give me the same heartburn.  I don’t know anyone.  Who will I talk to?  What if no one acknowledges or talks to me?   What if I’m dressed wrong?  What if they don’t like my kids? 

In my world, I’ve always been a “transplant”.   And always within a small town.  Everyone KNOWS if you’re “from around here” or not.  I was that way as a child…and have been in two different locations as a parent.  My instant assumption is that everyone else attending ISN’T a transplant and IS from around here.  Naturally, leaving me as the one and only outsider.  How egotistical of me. 

Add to the existing stress of the social situation alone, it’s a pool party.  Involving swimsuits.  Lovely.  I had already been advised that because Ben is under 8 he would have to remain at arm-length to me the entire time.  When we go to our own town pool I’m able to let him play a bit on his own because I can always see him.  For safety purposes though, I get it.  And honestly in an environment I don’t know, I’d feel safer staying very close to him anyway.  So that means…I’m gettin’ wet.  

I tried a few times through the week to weasel my way out…the weather forecast looks to be chilly that night…it might rain…I may have a headache that night.  (Hey, that excuse has worked for me before!)  Nothin’ doin’.  The gentleman made it clear that because he did all of the driving to and from VBS all week, it was my turn to participate. 

Fine.

I anticipated it all day.  I did.  Sad but true.  It was a flippin’ pool party….and I had a stomach ache over it.  Have you been there though?  Where the moms all seem to know each other?  They whisper?  They giggle…they refer to each other’s FB pages…they gossip about others they know.  The only convo I have is with the child I brought…watching over that particular child like a hawk to keep them in line so as NOT to draw attention.   Once in awhile I can chime in on some football talk with the Dads…of course that never fares well with the moms either.  Sigh.

I worked a full day that day…showered and donned my swimsuit with t-shirt and shorts (assuming my hot pink cover-up may be a bit too much).  We arrived at the facility a little early took a deep breath and made my way to the pool gate.   WOW.  This place was enormous.  Waiting in line on the hot blacktop parking lot, trying to keep all three kids in line, I craned my neck to see the layout of the deck.  Was it all open for the whole group?  How many chairs are there?  Given our distance from the front of the line will I still get my choice of seat?  And then…I realized…I forgot deodorant.  Dear GOD.  Just as I began to panic and imagine all worst case “what is that smell, does anyone else smell that” scenarios Ben began his rant:

Why is this TAKING so long?!?!

It’s okay, buddy…we’ll get in soon

It’s so HOT out here!!  Why are we still STANDING here?!?!

Ben, please just hang in there with me, buddy.

But these people are takin’ FOREVER.  What’s wrong with them??

Honey, we have to wait in line…they aren’t quite ready for us yet.

GOSH…this is ridiculous!!

As I crouch down to whisper in his ear and put pressure on his shoulders I see the other moms begin to turn around and look.  Their eyes were compounding the heat of the sun ten-fold.  His frustration eased as the line began to move, rolling his eyes as we made our way through the gate.  Yes, he’s a charmer, that boy.

As we entered the pool my anxiety began to drain as I quickly spotted several available seats and alcoves to set up “camp”.  I soon discovered this would NOT be a circle of moms gossiping as their children run wild.  In fact as more and more people poured into the area, I found quickly that I would be lost amongst a sea of people.  THANK GOD.  Breathe.  Relax.  Have fun.

The older two had their hearts set on hitting the enticing water slides in the distance…so Ben and I decided to take it easy and hit the lazy river.  Fine by me!  We made our way over, passing several moms of older kids who were able to sit and relax a bit.  And naturally they stopped to watch Ben act out his most recent favorite movie on our way to the river.  “Yep sweetie…you look just like Ironman.”  Loud yet precise sound effects, arm snaps and all…he WAS ironman that night.  Trying to keep his re-enactment from striking another child we finally hit our destination. I stepped one foot in the water and OH MY SHIT it was cold.  My concern with air temperature this particular night was actually valid…it had only barely reached 80 that day and with a setting sun, the air was only getting cooler.  But my butt landed in that inner-tube, I grabbed on to Ben’s and we floated…and floated…and floated.  He loved it!  The stress had immediately filtered from his face and he was my happy smiling boy again.  It’s frightening sometimes how alike we are.

Once he was satisfied with a couple rounds of laziness we hit the water jungle gym…you know the kind with the big bucket at the top that eventually fills all the way up and spills over all of the kids?  Yeah that one.   Making sure to avoid the bucket o’ ice, I stood off to the side in the shallow water for nearly an hour…watching him slide, then climb, then slide over and over again.  Amongst the chaos of children splashing and bounding I actually witnessed Ben engage.  He found a friend and played WITH her…not just beside her.  Thankfully my sunglasses covered my tear-filled eyes and I was soon distracted by another mom encouraging HER child to go make friends.  We struck up a convo and snap…before you know it Mommy was making a friend too!  I’m never bad at it but am ALWAYS scared of it.  Please tell me why that is?? 

I grew up being the ever-self-concious-not-quite-up-to-par kinda kid.  I wasn’t beautiful.  I wasn’t skinny.  I was the girl who walked around the public pool with her arms across her stomach, self conscious of her giraffe-esque height.  If I wasn’t there WITH my friends I was convinced I wasn’t going to make any.  But I always did.  Every. Time.  My mom used to tease me incessantly that I made a new best friend every week when we went to the grocery store.  It never failed that as mom was sifting through coupons and writing her check, I was at the end by the bagger chatting it up with the other little girl waiting for HER mommy.  I would spend the next 20 minutes in the car telling Mom aaaalll about my new best friend…her name, where she was from, what grade she was in, you get the picture.  I’m not sure if I can chalk that up to social aptitude or astounding interrogation skills.  Maybe a little of both.  The gentleman could attest to the latter.

My mother, however, was not a social butterfly.  Not in any way.  She was the mom who dropped me off for events at school if she could at all get away with it.  At the curb.  She sat in the car and honked when picking me up from a friend’s house.  I wonder now what my friends’ parents thought of her.  To me, that’s just how she was.  I always thought it would be nice if she befriended some of them…maybe stayed to chat so I could play with my friends a little longer.  Never happened.  I love my mother dearly but that is one attribute I don’t wish to inherit.  I know now that she had this same anxiety when I asked her to take me to a friend’s birthday party, or a band parent’s meeting, or anything requiring social interaction with strangers.   I feel guilty in retrospect for putting added pressure on her, understanding now what she must have felt.  But I’m glad I got a little pressure to follow through for my kids last night.

It took some convincing to get me out the door.  (And maybe a little leftover pinot noir in the fridge with my name on it saved as a reward for later.)  But I got us there…and we really did have a great time.  Cold water aside, I haven’t seen Ben smile that much in awhile.  Naturally we faced Hell’s furry on the way home…we’re finding that for Ben with great highs come drastic drops.  But it was worth getting him out of the house after a week or so of homebound summer vacay just to watch him interact.   They were all able to splash and play with the new pals they made at VBS and spent our twenty minute ride home telling me all about THEIR new best friends. 

And that makes the heartburn worthwhile.