Tuesday, August 26, 2014

The Passing of Genetic Destiny?

Even as far back as when Bonnie Jean and I began serious dating, we talked about the possibility that our kids would be autistic.  It was just part of the package that came with the idea of marrying an autistic man.  I seem to remember Bonnie Jean saying that once she understood me better, she didn't think she'd have a problem with it.

When we got pregnant after a few years of trying, it wasn't too far from our minds.  The medical intake forms for the OBGYN asked if there was any history of autism in the family, and I seem to remember joking that I wondered whether the doctor would be surprised if I told him that yes there was a history of autism in the family because I had Asperger Syndrome.

When Taliesin was born I don't remember how it came up but I took one of my blind leaps and somehow ended up disclosing my autism to one of the nurses at the hospital who was absolutely fascinated by me.  Talking about my Asperger Syndrome diagnosis can be hard even with people that I trust will react well- even to the point that I've had times that the experience leaves me shaking.  But sometimes I just dive in and let it flow.  Fortunately it turned out well.

When Taliesin was late with his language development milestones or broke into sobs of tears because a stranger dared smile at him, autism wasn't far from our minds.  He was so scared of strangers that we had to tell the people who took care of nursery at the church not to pick him up to calm him down when he was upset.  He'd calm down faster if he wasn't also screaming about someone touching and looking at him.  Fortunately they were willing to believe us and reported with some bewilderment that our judgement was right, he calmed down faster on the floor than being cuddled by a stranger.

Some family members have kind of started from the assumption that every one of these signals was a definite sign that our little boy was on the autistic spectrum.  But we never saw enough to consider it a justified assumption.  We've let our pediatricians know our family history and routinely discussed Taliesin's quirks with him.  But until recently our pediatricians had never considered that enough symptoms were falling into place to be taken seriously.  It always seemed a possibility that Taliesin might just inherit a few of my quirks without getting the whole package.  During our last well visit though we explained the severe social anxiety, literal concrete thinking patterns, rigid routines, and ritualistic play patterns that our son was developing.  And now we've got a referral to the University for an autism screening.  While the result isn't certain, we're feeling more settled that they will make an autism spectrum disorder diagnosis.

I'm starting to see a lot of my own limitations in my son.  As we were describing how Taliesin literally took months of acclimatization to be willing to talk to the newly moved in neighbor kids because he'd rather just stand there and smile shyly it made me think of myself as an adult at work.  It takes me a long time of adjustment- weeks to months actually-to feel comfortable with a new social group and be ready to do anything much more than just sit there and read by myself.  I'm just happy to have people around so that if I choose to take the effort to interact they'll be there for me.  After a long time maybe I'll find a few people that I can figure out how to talk to on a more chit chat basis.  When changes in seating arrangements force me to sit by new people on a regular basis I quickly become mostly silent and miserable.

Within the last few weeks my son has finally gotten over his initial shyness to try to talk to the new neighbor children.  But somehow they are just feeling confused by his choices of conversation- such as what kinds of shoes they are wearing or whether there are ravens on the roof of the building and what noise they make.  And yes- he knows what ravens look like, along with a number of other birds because his bird obsessed father has been teaching him.  So the little girls he is trying to befriend just ignore him, perhaps just not knowing how to react- especially given his history of not being up to speaking to them.  Just to example how firmly that expectation of his silence has formed, Bonnie Jean saw one of these little girls wanting to play with Taliesin's bike but being stopped by her mom who wanted the little girl to ask Taliesin first.  The little girl burst into tears, crying that Taliesin wouldn't answer.  Fortunately, Taliesin was feeling social and was willing to speak to the girl and answer yes.  And just like me at work trying to figure out how to chit chat with fellow employees, the comfort required to say that much took him months.

When we decided to get pregnant we knew this might be the result.  I've known my life was worth living and therefore worth passing on, especially if I could make it a better life for my son than I had had- undiagnosed and coping with the emotional strain of a sometimes horridly abusive home.  As much as I want to ease the difficulties, I know I won't ever be able to completely make them disappear for him, just like I can't do that for myself.  Like me, he'll be likely to susceptible to episodes of anxiety and depression.  Like me, he'll probably have trouble seeing into his own mind to understand the emotions churning there.

I hope that like me he'll have a passionate commitment to justice, gentleness, and truth.  I hope that like me, he'll be able to take a fierce joy in obsessively enjoying life.  I hope that like me he'll thirst to learn new things all his life.  And I hope that, unlike me, he'll learn much earlier in life to love and understand who he is as he goes through every step of life in his own way.


Matthew Cline said...

That's been one of my concerns as well. Thankfully, based on my recent studies in a music ed program, public school educators are better trained to teach students with all varieties of abilities and special needs. When I was in public school, they had no idea what to do with me, and ended up putting me in special education home rooms, mostly isolated. Now, students are given a more beneficial and integrated education for all students, ridiculous standardized testing aside. I found, even my fellow music ed students, who were 4-9 years younger than me, were already much more used to the greater integration. It was no different for the students I observed and taught during student teaching assignments. It was normal for them to have classes with students that had IEPs and 504s. Quirks didn't seem to phase them, and there was zero tolerance for any kind of bullying, from students and adults alike. In that way, regardless of whether or not you send your children to public or private school, I think you'll find that your son's peers will be much more understanding, accepting, and even embracing than our peers have been for you and I.

CrouchingOwl said...

Looking back on my experience in special education is frustrating. The administrators were competent enough- the appropriate diagnosis just didn't exist yet so they were completely guessing as to what I needed. They could see all the pieces but there wasn't any picture for them to put it together into yet.