06 September 2012

a unique child

How far would you go to advocate for your child? In January First, father Michael Shofield and his family struggle to find the right treatment for his daughter Jani, who was diagnosed with schizophrenia at six years old. Join From Left to Write on September as we discuss the Shofield's memoir January First. As a member, I received a copy of the book for review purposes.

I read January First in one sitting.  I literally could not put it down.  Some of it, a lot of it actually, was difficult to read, but I just couldn't stop until I reached the end, until I knew what had happened to Jani and her family.  It's not accurate to say "how they ended up" because they haven't "ended up."  They're living each day as it comes.  
I can not, would not and will not say that I even begin to understand what the Schofields have gone through.  I do know what it's like to parent a unique child though, a confounding child, and one that does not fit neatly into any category, diagnosis or label.  Not that I'm a fan of labeling children or people for that matter, but when you don't understand why your kid is the way he is, or does the way he does, having a word or a condition or description to feel as if you know a little about what you're dealing with helps.

We used to have regular meetings with the school psychologist.  In preschool, he couldn't be moved up to the three year old class room because he wasn't potty trained.  He couldn't handle scissors properly yet.  We were informed of these things as if they were character flaws, as if there was something wrong with him.  He commenced to screaming and crying at drop-off time and we commenced to keeping him home from school.  We found a much better program that was much more inclusive of children at all developmental levels, rather than one that implied that we had already failed him, at the age of three, by not insisting that he learn to manipulate scissors, and by not forcing the potty issue.  Have you ever gotten locked into a battle of wills with a two year old over the potty?  Heh.  Good luck with that one.  
But we talked it over with the doctor, who recommended some occupational therapy to help with delayed motor skills.  He'd had speech therapy as a baby....he didn't utter his first word until he was nearly 18 months old.  That word?  Apple, pronounced ap-mmm, while pointing at a picture of an apple. Mama and Dada came much later.  

In kindergarten and first grade, the teachers expressed a little concern about his social skills (or lack thereof) and his attention.  He'll probably grow out of it, he'll be just fine, he's just a little behind, they said.  Don't worry until there's something to worry about.  It has to be said here, this is an extremely bright child, with a photographic memory.  He taught himself to read before he was fully potty trained (at 4, finally).  He has this fascination with Japanese anime, specifically Pokemon, and he memorized 1500 characters, their powers and their strengths and weaknesses.  1500.  
In second grade, at conferences, I asked the teacher straight out, tell me about his attention.  She let out a huge sigh of relief and said, I'm so glad you asked about it, because I was going to bring it up if you didn't.  So, we did all the recommended testing, and were told that he had a solidly average IQ, definitely had Attention Deficit Hyperactivity Disorder, predominantly inattentive type, and showed significant markers of Asperger's Syndrome.  The psychiatrist was on the fence about whether it rose the level of clinical diagnosis and ultimately decided that it did not.  

We tried adjusting his diet; this kid is picky beyond reason and if dinner did not consist of his favorites, well then, he'd just wait till breakfast to eat, thanks.  And he didn't mind skipping meals.  At all.  Although I was never fully comfortable with it, we tried medicating him for a time.  In the end, the meds didn't address the real root of his struggles, and they just made him want to eat even less.  This was an eleven year old child who weighed maybe 50 pounds.  You could literally count his ribs. We had an incident that freaked me out sufficiently to stop medicating him not quite a year ago, and we haven't been back.  Since then he's gained 20 pounds.  20.  We tried therapy, sports, martial arts; some have been more helpful than others. 

Some of his quirks are due to immaturity and he's catching up with other kids his age.  Some are due to Moe just being Moe.  His younger brothers, Larry and Curly, seem more mature than he does at times.  He struggles to understand social cues and social norms.  But he's learning....other kids are good teachers of what is ok and what is not ok for him to do or say, more so than we are.  From all reports from other parents and teachers, he is beloved by his classmates.  We send our children to a very small parochial school, and the kids have all grown up together.  They accept and love him, quirks and all.  I wish he could stay at this school, with these kids forever.  But he's in junior high now, soon to head off to the much bigger high school, with lots of kids he doesn't know.  Will they accept him and love him too? 

I love this child, love him more than my next breath.  
This was the first year that I didn't go to meet the teacher night, and talk to his teachers about him, briefing them on what they could expect from him.  I've done that every year.  I debated whether to do it,  and Captain America (my flying, traveling spousal unit) and I went back and forth quite a bit.  In the end we decided to let him make his own impression, not to give the teacher advance notice and thus a preconceived notion.  So far he seems to be doing well, shining all on his own.  Just this week, he got the highest grade in his class on an English assignment. 

It's moments like that that make me feel like he's going to be ok.  

As parents, we all worry about how the world will treat our children.  As an adult, I understand and accept that challenges, heartbreaks and disappointments are what make us strong and help us grow.  As moms and dads, though, it's so difficult to watch your child struggle. 

I have a unique child. Do you?