Welcome Back, Year 2!

Well hello there, Happy Autism Awareness Month, and welcome back! 

It’s been 11 months since I last posted on this blog.  From time to time, I wondered when I would write again, if I would write again.  But in the back of mind, I knew I had April.  And so here we are. 

I’ll say upfront that this will hardly be the 30 day, daily blog that I wrote last year.  While I indeed loved writing it, I hardly have enough material for another year.  J.   But I would like to update you on a few things, let you know how we are progressing, and then at least I won’t feel like I’ve done you all wrong, sucking you in last year only to drop you like a hot potato come May.  A few updates will be good for both of us.  So I’ll try to hop on every couple of days until I get through what’s on my mind, and then we’ll see each other next April again.  Deal?

I’ll start with where we left off last May, which was honestly an undesirable place.  Starting at the end of April, and for the next several months, Coleman’s behavior underwent a precipitous decline.   I’ve tried to pin point when, exactly, things started to unravel…but can’t find a single defining event.  Perhaps it was his age, hormones starting to emerge in his small but growing body.  Or maybe, as I sometimes suspect, he began understanding more of the things going on around him, but still not enough to make sense of it all. And maybe that incremental understanding actually was making it harder in the short term.  In any case, days were hard with Coleman but evenings were far worse.  Sunset initiated a rather dreadful mood in our house, with the entire family walking on eggshells trying in vain to not upset Coleman, to not bring on another tearful end to the day.    The difficulty began as soon as we began the ascent upstairs – his need to touch every stair corner, twist every banister railing – and then continued with similar compulsions we made our way to the bathroom to wash up, to say goodnight to the girls, and ultimately to bed.  But every step in between was something that had to be done precisely as he needed – stand a certain way, move a specific object, say certain words, it was exhausting to keep up with and most times, we didn’t know exactly what he wanted us to do, and he would end up yelling, crying, pulling hair, trying to communicate to us what he wanted, which we sadly didn’t understand.   A literal transformation in a matter of minutes.   And every night, the ending of it all was him going after Emma.  Every night.  He’s a small boy, but when he is aggressive he is strong, and despite our attempts to shield her, many times he got her.    Poor Emma, who loves this kid more than anyone, was devastated by his actions.  So every night, we would try to change the course of what was about to happen, starting well before we headed upstairs and continuing once we were up there.  But much to our collective dismay, every night we failed, leaving us all crying, exhausted and confused.   And worse, Coleman would stare desperately at us, confused by our sadness, completely and entirely unaware that he had anything to do with it all.   “Why Emma crying?” he would ask, desperate for her to stop.  “Stop crying Emma!” he yelled.  But Emma had reached a point that she could no longer take it.  “Go away Coleman!  You are terrible!!”  He looked at me confused, seeking some reassurance.  But I too was upset and he could tell.  He came closer. “You okay?” he asked.  “I’m angry Coleman” I’d say, exasperated.  “I’m sorry. You okay now?  You happy now?”   His questions continued, anxious for me to be happy, confused why I was sad.  He’d try to comfort me: “I love you.  You okay now?” as if the words would magically make all that had preceeded vanish.    It was devastating, really, to deal with.  My heart broke for the girls, exasperated they had to deal with this insanity.  I felt especially distraught over Emma who received the brunt of his aggression – and who thought, mistakenly, that his aggression toward her was somehow a reflection of how he really felt about her.     And it was equally heartbreaking for Coleman, who was so confused and upset by all of it, every night, despite his part in it all.  His honest confusion and intense desire for us all to be happy after the episodes ended each night was so sad.   We tried, unsuccessfully, to stop the behavior for many weeks.   Many sad, long weeks.  The fact was, however, that nothing we did worked.  We were all emotionally and physically exhausted from the stress of our evening ritual.     And then, miraculously, I received a call:  almost 5 months after it was approved as part of Coleman’s IEP, the in-home consult with an outside BCBA was being scheduled.    

She came and observed Coleman in several settings – mornings before school, middle of the day, weekends, and finally, yes, even the dreaded nighttime routine.  She witnessed the madness in all its glory.  Later she told me that after she came for the evening consult, she went into her car and cried, the stress and exhaustion that we were drowning in was so clear, so heavy, that she could feel it and she felt overwhelmed by it.  “I felt so much sympathy for you, for Coleman, for Emma.  It was absolutely crushing to watch.”  And so she wrote her recommendation to the school, calling for an aggressive plan of in-home services to improve the situation all around. 

The IEP meeting to review her recommendations was a few weeks later.  We were supposed to hear her recommendations and decide ‘as a team’ what would be best for Coleman.   I was anxious ahead of the meeting.  I told myself over and over in the car “You will not cry. You will be tough.  You will not cry.”  But I hadn’t even stepped foot in the building and I could feel my throat closing up.  It was a culmination really, of pent-up frustration, of behaviors that had been building and worsening for several months, of shame in not knowing how to handle this confused child.  But most of all, it was exhaustion.  Both mentally and physically, I was so very, very tired.  And so my tough girl, no-cry attitude was on shaky ground before anyone even spoke a word.  The meeting began with the outside BCBA’s review of her home visit, and her words, dang it, set my heart afire.    “This family needs help” she quietly pleaded.  “They have turned their lives upside down, involved the entire family, trying desperately to accommodate this little boy who has no idea how to stop what he is doing.”  And so began her appeal for help, and in her words I heard the ringing truth that our family was falling apart from the stress surrounding our ability to manage our little man.  We were desperate for help.  I said nothing but silently cried as I listened to her sad, short summary of our lives.  Everything she said was true.  At the end of the meeting, we got the home services, but I wondered if it was too late.