17 years of speech therapy.  That is really hard for me to wrap my head around.  I came to that realization a few months ago as Brian began private speech with a new therapist at a new center a few months ago.  As I sat watching my teenage son struggle to pronounce sounds through the observation window I saw my adult life flash before my eyes.  I saw images of a younger Donny, a younger Brian and images of Nikki and Catie as they were dragged along during the early years.  I thought to myself…….How can I still be here?  How can this be?  Seriously, I might be eligible for some kind of award or prize.  17 years is a long time.  Even though I have not been the student, I have absorbed as much about speech as my sons during these countless speech sessions.

When “I” started speech I was a broken, traumatized young mom.  My sister had just died and I was barely functioning.  I have a vivid recollection waking up (if that’s what you call laying awake until dawn , then peeling my exhausted, grief stricken body out of bed) on March 1, 2002.  I know this because we buried Cathy the day before.  I told myself that morning that all my attention must be directed towards Donny now.  He was five at the time and I knew he needed some type of intervention and I knew speech was most likely the appropriate starting point.  I’m positive he should have started earlier but at the time I couldn’t face it.  After all, these were the cancer years, not the autism years .  I knew my limits and couldn’t possibly process and accept that two of the people I love most in the world were dealing with very complicated incurable conditions.  So literally, that’s how my relationship with speech therapy began.  The cancer chapter sadly closed and the autism chapter sadly opened. Almost to the day.  I had no idea what was waiting for me in the upcoming years and baby Brian was not even a thought. Pretty unbelievable as I think about it. I don’t want to think about it though.  Frankly, I wish I could forget.

Donny’s first therapist was named Kathy, something I took as a sign from my Cathy.  She was going to be the new Kathy in my life and in my mind she was going to make all Donny’s struggles disappear.  I latched on to her, as I have a tendency to do with special therapists and teachers.  It makes me feel safe.  It makes me feel like everything will be okay.  As I’ve matured I’ve tried not to latch on for various reasons, but to some extent I still do.  That year I learned so much terminology.  Echolalia, expressive and recessive language and auditory processing to name a few. I was doing my best to absorb so much new information.  If I had had the luxury of a crystal ball I would have studied communication disorders in college,  Kathy guided me and held my hand as she suggested we have more testing done.  I thought of her as my guiding angel sent to me from my sister.  In those days I thought anything positive that happened in my life somehow my sister was behind it.  May sound silly to some but it’s how I managed through those days.

Fast forward to 2018.  I’m definitely not the terrified girl I was then.  Besides the obvious that I am 17 years older and probably the oldest parent in the waiting room…….I’m okay.  I wasn’t 17 years ago.  I was far from okay.  For several reasons I was devastated.

Now as I look around the waiting room I see myself in various stages.  I see a mom with two small children. One sitting on her lap and the other throwing himself on the floor.  The mom is doing everything she can to redirect the tantruming child.  I see her stress, I actually feel her stress.  Instead of looking away and acting like the episode isn’t happening I smile at her and tell her it gets easier.  I don’t want her to feel judged the way I always did.

I see another “me”.  A mom with a son a bit older who is consumed with a certain topic. He is perseverating (another word I picked up along the way).  She tries to engage him in a different conversation  but he’s not having it.  I see her anxiety.  I feel her anxiety.  I was her.

This waiting room is much different than our first waiting room.  Gone is the small toy box in the corner with used toys.  The blocks, cars and books don’t exist.  Now I see ipads mounted on a circular table to keep the siblings busy and TVs hanging in 2 corners.  Perhaps though the biggest difference in the waiting room is me.  I’m much more relaxed and I don’t waste my energy worrying about Brian becoming a sideshow as he furiously stims on his ribbon. I let Brian be Brian and find a seat. Years ago I would have been nervous and stressed and pulled something out of my bag of tricks to attempt to end the repetitive behavior,  I’m not concerned with what people think anymore. That in itself has probably taken years off my life.

As I look around at all the beautiful children I wonder how their story will play out.  My story didn’t play out exactly like I had hoped and prayed for.  That’s the kicker. We aren’t really in control.  To some extent we are.  We can get our children to therapy.  We can be the facilitator of their services.  We can try center after center and approach after approach but it may not play out like we want.  I think that is the most difficult part of all.  To my point, Brian had early intervention services starting around 20 months. He went to a special needs preschool and received wrap around services.  He has had speech services for 12 years and is loved to the moon and back and still would be considered nonverbal.  Is it all random? Is it fate? Is it God’s will? These questions really can’t be answered and actually don’t even matter. I’ve spent countless nights torturing myself with these questions and can’t come up with anything.  The only thing I do know is your story is just that.  It is YOUR story and must be accepted.  Plain and simple.  Acceptance brings peace and I think peace brings fulfillment.  I’ll never stop trying, that is not my point.  Try everything, read everything, talk to doctors, psychologists and other parents.  Why some kids progress further remains a mystery to me.

My 17 years of speech has forced me to evolve and that is a good thing. I’ve grown into my role and accepted it. One of the most important things I’ve learned is that my heart is comprised of layers.  Each life altering experience I have had has created a new layer and has made me who I am. The layer created by the heartbreak of autism is slowly but surely being covered by a layer of peace and that helps me move towards the future. Make no mistake………….I am not happy about this.  Seeing my sons struggle is not fun. It has caused buckets of tears, years and years of self doubt and frustration and sadly to say fractured relationships. However,  I just know that it is my story and I want it to read the best way it can. I try my best not to get too consumed with the future.  I can’t piece it together yet and it will make me crazy trying to figure out what makes the most sense for our family. A scenario that sounds great one day may not a week later.   To quote yet another song (or Ben Stiller in my favorite movie) ….Day by day.

It’s gotten me this far.