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?”
Aspberger’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.
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!
ReplyDeleteThis 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
ReplyDeletebeautifully written...nothing like therelief when someone satys they can help our children....God Bless little Ben
ReplyDeleteYou 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!
ReplyDeleteI 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!!!!!
ReplyDeleteI 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
ReplyDeleteI 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.
ReplyDeleteXoxo
Andrea
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
ReplyDeleteIf 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.
ReplyDelete