Thursday, April 12, 2012

Playing with Puzzles

By 11pm I was finally horizontal.   It was an unusually chilly evening so the blanket was wrapped up tight around my chin.  Despite being cozily tucked into my warm bed, sleep would not take over.  Thoughts and worries were pinging through my mind like an eight ball determined not to hit a pocket.  Ben’s appointment with his new psychiatrist was scheduled for the next day, and while fresh eyes/ears/help brings a sense of hope, fear simultaneously pervades.  Our most recent visit with his pediatrician left us wondering what we were truly dealing with here. 

We have been treating ADHD symptoms since last fall which has provided significant improvement academically…and I thank God daily for that.  Literally.  But those wonderfully effective meds have also seemingly brought with them a heightened emotionality and reactivity as well as compulsive behavior.  Nothing entirely new coming from Ben but more recognizable these days.  This medicine was supposed to make him better.  Two formulas down…only one to go.  There aren’t a ton of choices left at this point.  What if we try them all and nothing works?  At this point I was at a loss.  From his pediatrician’s perspective his condition has surpassed simple ADHD, requiring specialized treatment.  To the psychiatrist we go.  Thankfully our pediatrician provided a trusted referral to a provider he has utilized for his own children which brings a sense of comfort.  Much needed comfort. 

Tuesday morning was hurried: orthodontist appointment for my eldest, squeezing in a few hours of work at home, then heading out for our appointment.  As I turned off the television and suggested we grab shoes and jacket he reluctantly sat up, stuck is feet out for me to provide my motherly shoe-tying duties and asked who we were going to see.

Me: We’re going to see your new doctor.

Ben: Laura? (his previous counselor)

Me: No, buddy, but a doctor kind of like Laura.

Ben: The doctor that speaks English? (his previous psychiatrist with a STRONG German accent)

Me: No honey but a doctor LIKE him.

Ben: Oh.  Is he gonna help me?

As I struggled to swallow the soccer ball lodged in my throat and threatened the tears that were pooling in my eyes I choked out “I sure hope so, buddy.  I sure hope so.”

We arrived at the office and it was beautiful.  Much different than the soiled yet clinical-esque center we had grown accustomed too.  The staff was friendly.  The waiting area was clean and comfortable.  After signing in we settled into a nearby couch where Ben could stretch out and rest is tummy from the curvy, hilly drive.   I massaged his sweet little temples and let my mind wander.  I hope I wasn’t lying to my son when I said this one would actually help him.  Someone has to see what is really going on.  Right?  I want to scream, cry, stomp my feet, punch someone…”Look at him!  Listen to him!  Tell me what to do!”  So far I’ve found no luck in that regard.  Unless you count “try these pills”.  I know he’s young and these things are difficult to determine.  But we are going on two years through this journey with so many different perspectives along the way.  Yet…no answers.  Could be this.  Might be that….with a side of those. 

God damn it. 

“Benjamin?”  The doctor stepped out to greet us with a smile and handshake and escort us back to his office.  I was pleasantly surprised to find that he had in fact perused the 9 page form I had completed prior to seeing us.  That never happens you know.  Typically I find myself restating everything I had already spent hours writing down in those teeny tiny lines, only to be placed in a folder to collect dust.  Not this time.  He started with a series of questions for Ben, who incidentally could not have seem less impressed if he tried.  I’m sure in his little head he was thinking “been there done this…do you people not share info??”  But he answered as best he could…and I found myself struggling NOT to interject my interpretation on his behalf from time to time.  I could see by the look on the doctor’s face his line of questions had little to do with his answers and more to do with the interaction itself.  (What is he looking for?  Because Ben is giving some whacked out, not entirely accurate answers!) 

After making a number of notes the doctor then turned to me and asked me what my primary concerns were.  I explained what we had been through up to this point…the doctors, the counselors, the meds.  I expressed concern for where I felt we were headed…unrelenting symptoms and reactions to medication resulting in the prospect for additional prescriptions.  I just don’t know if I can do that to him…unless it’s absolutely necessary.  I wasn’t convinced we had stepped foot on the right path to begin with.  And then he asked what seemed to make all other things in my head go completely silent.  “Has he ever been evaluated for Asperger’s?” 


Holy shit.  I instantly became weightless, levitating above us all in that small dark room.  “He sees him.  He really sees my Ben.”  It took my breath away.

I looked at Ben and back at the doctor…and back and forth a few more times.  As far as I knew he was evaluated for everything two years ago.  Four hours with a counselor and multiple assessment forms taking days to complete…surely they considered Asperger’s.  Didn’t they?  But why hasn’t anyone seen it before?  I remember asking about it when this all began…because if I’m honest with myself I knew that was it.  I realize it’s extremely difficult to diagnose such things in young children.  At age four their best guess was ADHD or ODD.  We were told medication is the only treatment which would likely have to wait until he was six.   Every conversation with a counselor or psychiatrist from that point on left me feeling as though a serious piece to this puzzle that is my son was missing.  And I was desperate to find it. 

The look on the doctor’s face suggested this was as plain as day to him.  And I wanted to kiss him.  Well…not a “let’s make out” kind of kiss (although he WAS rather attractive).  But a “thank you for finally FINALLY hearing and seeing my son” kind of kiss.  How did he do it?  His words from that point on swam through my overflowing mind as I feigned a smile and nodded as though I was mentally steno graphing his every word. I caught the key pieces: school, assessment, resources, internet…I’ll be honest it took some time to sink in.  We changed his meds from a stimulant to non-stimulant and were on our way.  Home.  With some answers.  And the hope for more. 

I caught a glimpse of his little studious face staring out the window every few minutes as I navigated the desolate county road.  He had no idea what all of this meant.  Did he question my reassurance that he would in fact get help from this man?  Was he wondering what in the hell was next?  I sure was.  But I have to admit I felt a slight sense of relief.  For the first time in two years I felt truly hopeful.  I felt a sense of validation.  I DO know my son.  At least we have direction for our next steps.  No definitive answers yet but we’re getting somewhere.  And it finally fits.  It finally makes sense.  All of the years of compulsive nail-biting and nose-picking, his freaking out at loud noises, his meltdowns when spilling a few drops of water on his shirt, his desire to wash his hands repeatedly, his need to erase his homework five times to rewrite it because the letters weren’t all exactly the same size, his struggle to build positive relationships at school, his frustration at his father and me for not appeasing his need for minute details…”how many minutes until my appointment?  How many days until my birthday?  Until our vacation?  Until first grade?  Until Christmas?”  The countless hours spent playing the exact same video game over and over and over again.  His obsession with Thomas the Train.  With Darth Vader.  Each of these characteristics individually is of little cause for concern.  But put together? 

We’ve found and gathered the corner pieces of this puzzle…you know, the ones that are somewhat easy to find and place?  If we can just sort those inside pieces and put those in the appropriate spot, then maybe, just maybe…

…we CAN help him. 


  1. I hope everything falls into place for your sweet boy and family. I can't imagine the stress you have been through, but it sounds like you have found a doctor that is connecting the dots better than the others. How lucky your kids are to have such a persistent mom!

  2. This is so beautifully and clearly written for someone who has the weight of the world on her shoulders. I hope that you can feel the strength of many people, friends, strangers that are reaching out to help hold you up. Ben is going to be just fine...with you as his mom/champion/advocate... Sending you love and hugs my friend, DG

  3. beautifully written...nothing like therelief when someone satys they can help our children....God Bless little Ben

  4. You are doing such a great job for him! :) What a beautiful story. I can't imagine how tough it is to be on your journey. Switching from a stimulant to non-stimulant medicine is a big change, I really hope that it helps with side-effects that you may have been seeing. Big hug to you and your family!

  5. I am so happy that you are finally getting some answers that you are looking for! I know it is a long road...and I pray that Ben will get what he needs;) I taught spec ed for 8 yrs and had quite a few students with Asbergers. Your vivid description of Ben brings a few of them right back to me in my mind. Best wishes to all of you!!!!!

  6. I hope this doctor can help you and you can also get him the help he needs at school. Good luck to your whole family as you deal with this. - just keep swimming

  7. I thought i had commented last week but apparently not. I look up to you so much mama! You write witb such poignancy and honesty that i felt that ball lodged in my throat. I'm so happy you recieved some answers but most of all i am happy you have hope.

  8. Oh wow, it's as if you wrote my story! It was only 3yrs ago I sat in a Dr's office and started on this exact EXACT same journey. From one mama to another huge hugs!! Its nice to finally have answers and better still direction, not to mention validation that you are not going crazy!! I hope doors and opportunities continue to open for you and your son. Cheers Julia

  9. If you can, get a hold of the Skill Streaming curriculum. It breaks out social skills in a systematic and developmentally appropriate way and will give you ideas for your son's IEP, if and when it is determined that he should indeed have an IEP. Best of luck to you! These are some of the most charming, intelligent, frustrating children in the world! I say frustrating because it is often difficult to fathom why, when something is repeated over and over, the child 'fails' to learn it. The child has NOT failed! They are just wired differently and it may take a very long time to teach certain things.