Going out in public with my sons

Sometimes I think it would be easier to just stay home.  Like forever.  I tried to take my boys to a model train expo at the aviation museum today.  What should have been fun turned into a journey down frustration lane.

I have told you all how much I love my sons.  What I have not told you here is that we have some serious concerns about the behavior of both boys.  My oldest has some struggles with severe anxiety & compulsive behavior.  It is quite often disruptive.  He becomes paralyzed with fear and he can’t function.  Also, quite often things have to be “just so” or he becomes hysterical.  We were playing with model trains today at the expo and my “Thomas” was becoming increasingly agitated at not being able to control his environment.  So much so that a well meaning mother with whom I had been talking offered up that he might be OCD.  Those are the awful moments that make the world stop spinning for you.   Where the frightening reality that you want to ignore is staring you in the face and as ugly as it seems there is a deep part of you that knows it might be true. 

I had a similar moment with my baby “Percy” last summer.  He doesn’t really talk, throws terrifying temper tantrums, and can be in his own little world and tune everything else out.   One day I decided to do a test and banged a pot in his ear.  There was no response.  In that moment, everything changed.  I knew something was wrong with my child but wasn’t sure what.  I did waa-ay too much reading on the internet that night and then couldn’t sleep.  I envisioned all sorts of frightening diagnoses.  We have since had Percy evaluated by Early Intervention.  One of the reasons I started this blog was to document that journey, in part of help me process it all but also to offer encouragement to any other parents going through similar struggles.   He now receives Speech and Occupational Therapy.  He is already progressing in Speech.  I am torn as to how I feel about OT.  We will see.  He has been identified as having some Sensory Integration Issues– possibly Sensory Integration Disorder which is on the Autism Spectrum.  Some weeks I am sure he is Autistic.  Everything is difficult and makes him frustrated.  And when he gets frustrated it is like when Bruce Banner turns into the Hulk.  My poor baby rages and thrashes and bites and screams and hurts himself and everyone around him.  For a LONG time.  It goes far beyond your basic temper tanrum in intensity and duration.  I am sometimes reduced to a helpless puddle of tears, especially when it happens in public.  People stare and whisper and assume I am a lax mother who tolerates such behavior and he is simply ill behaved (hey people, don’t judge, don’t assume).  Once I basically got asked to leave the library because he was having one of his fits.  In those moments I feel the need to explain his behavior.   I stared at the librarian, inwardly both devastated AND infuriated, and said “He has special needs.”  I HATE having to say that.  I don’t want my son to be labeled in the eyes of others, but I also want them to understand that he seems to be wired a bit differently.  Besides, “special needs”, what does that mean anyway?   Ugh!  But how else am I to explain his behavior?

So, back to the train expo, where both boys had fits today.  As we were removing Thomas from the situation that was causing him so much distress, Percy became enraged that it was time to go.  And he became another creature.  God bless my teenage brother (my younger of two brothers).  He simply hugged his nephew tight and let him scream.  Percy kicked and cried even more and my brother simply held him tighter, never once looking flustered.  He could tell that people were staring and he later told me that he didn’t care what they thought.  He is pretty cool for a 17-year old guy.  He gave me some of HIS strength.   I have never been more proud of him than I was today.  He looked so much like a man, so strong and yet loving.  I am so impressed at how he intuitively knew what to do to calm my little boy down.  And amazingly enough Percy’s fit was short lived and he soon slumped onto his uncle’s chest.  Such is the power of a strong set of loving arms… I just wish I could borrow them EVERY time I need to take my boys out in public.