Monday Morning Quarterback

Sometimes parents have to learn to pivot, change their approach, and look at an issue through their child’s eyes.  I will never forget the day I brought Jim home after pulling him out of school with no idea of our next steps.  We had had a note or call everyday since the beginning of the school year, which had carried over from the spring semester.  We had had late night discussions with the principal, consultations with our occupational therapist, and he was becoming increasingly agitated, anxious and unhappy.  That day was the day I decided we had to take control.  The current setup was not tenable.  I had sat through several conferences over the last 8 months with folks telling me “he can’t, he won’t, and he’s not capable.”   I admit straight away that I was not receptive to what I was hearing.  I was not in denial, but I was hearing a lot of negativity without constructive solutions.  I believed in my son’s potential.  I saw a problem with our approach and understanding of what was going on with him.  Jim was not the problem.

When we got home, I sat down at the table with him, and I got out a workbook that had some practice sheets.  The house was quiet, and we went through one sheet after another for about 25 minutes straight.  So this child that I was told couldn’t sit still for even a minute, couldn’t focus, couldn’t get the concept, sat and worked with me completing worksheets for nearly half an hour.   When we were finished, I asked him, “Jim, does the noise in the classroom just bother you, is it too busy in there for you?”  He said, “Yeah.”  I asked him, “Jim, is it just too much, does it make you uncomfortable?” He looked straight at me and said with a big sigh, “Yes!” and slumped in the chair as if he was relieved.   It’s hard to convey the significance of that moment.  It had been really difficult over the course of that year to really connect with my son.  He had been drifting farther and farther away, and we were not able to have real back and forth conversations.  This language deficit was part of the Autism, and it made communicating with my child difficult at best.   So when he said that to me, there was a recognition that I understood how he was feeling, and his eyes lit up at the notion.  I didn’t know what we were going to do, but I knew he needed a break and we needed some time to figure out a new game plan.   We were in full on protect mode at that point.  It was a tough next couple of months.  He would script scenes from the past year every day, and every time he would do so the pangs of guilt for not having recognized the autism sooner, the frustration over not getting in for evaluations, and the lack of answers and guidance from those around us were powerful.

I have Monday morning quarterbacked myself to death looking back for signs and symptoms that I should have recognized as being on the spectrum.  I’ve looked back at pictures trying to pinpoint exactly when things may have started to change.  I had gotten a book on sensory processing disorder (SPD), but when I started reading it when he was 3 going on 4, the example stories described just didn’t fit what we were experiencing – the children’s cases described in the book were much more severe.  Literally six months later, I would re-read one of the stories and say, “Dear God, that’s us.”  Up until then, so many of the sensory behaviors we saw could easily be categorized as just a rambunctious toddler boy.  The meltdowns?  Maybe he’s just having a bad day.  The lack of play engagement? Parallel play is appropriate for 2 yr olds, and as he got older, well, he’s just a little shy.   In our case, ASD had been cruelly subtle in its progression.

I learned something very valuable during that time that has been hammered home constantly ever since – navigating the autism spectrum was going to demand more of me as a parent – it was going to demand everything I had to give and a lot that I didn’t even know was there.  There could be no phoning it in on any given day under any circumstances because the price of getting it wrong was/is just too great.  I have said many times that I just want to look back on this journey and say that we left it all on the field – no stone unturned.  Truth be told, that’s the way it is for all our kids.  I feel an obligation to put every bit as much effort into them and their needs as I do with Jim.  I try very hard to understand and validate their feelings day to day.  It can be challenging some days, but it’s often led to more constructive outcomes, a better understanding and a deeper connection with my children.

That day in our kitchen, Jim and I had our first real conversation in quite a while (of many to come) where he felt understood and advocated, and I like to think that maybe he also felt like he did not have to deal with all that was coming at him by himself.  Things had degraded so quickly that I think all of us were a little shell-shocked.  We took the opportunity in that low point to find faith and love in each other, and we turned to God as we did so and asked for his strength and guidance to find help for our son.  Over the next couple of months we would find enormous support, grace, and charity from all sorts of unexpected people and places as we aggressively sought out a viable way to get him the therapies he needed.   We were hopeful that maybe we could get him back to the classroom.  We had no idea the blessings that were around the corner.