Saturday, April 23, 2011

Diagnoses and Labels

I've been thinking a lot lately about diagnoses and labels.  More specifically, my children's diagnoses. A little over a year ago, after 6 months of tests and interviews and questionnaires, our neurologist told us Munchkin has a "High functioning PDD-nos."  We had no clue what that meant at the time.  It was towards the end of the meeting that the word "Autism" was thrown into the mix, and the ton of bricks hit my heart.

Fast forward almost exactly a year, and it became evident that Squirrel was struggling too.  Three months of testing, interviews, and even more questionnaires, and we were given another report by the same neurologist.  This one told us our girl had "Developmental delays associated with Sensory Integration Dysfunction."  It also listed many other things as secondary diagnoses, including depression, anxiety disorder, ADHD, a tic disorder (not otherwise specified), and Obsessive-Compulsive disorder.  Again, my heart was crushed.

I've accepted, and even embraced, Munchkin's diagnosis.  I know that it fits what's going on with him at this time, though he is making such great strides in his development, that I doubt he will qualify for an Autism Spectrum diagnosis forever.  In two more years, we'll take him back for a full evaluation again, and I don't know what they'll say then.  I know he'll always have sensory and motor issues, and probably always struggle with social issues.  But what about the rest of it?

And then there's Squirrel.  She's working with a team of professionals right now.  Her psychiatrist is treating her with medication for a Generalized Anxiety Disorder.  She also wants to start her on ADHD medication.  I'm not sure how I feel about that.  Not that I'm against medication--I'm just not sure her ADHD is "severe" enough to warrant drug intervention.  She has a 4.0 grade point average, so it's not affecting her grades.  She struggles a lot with organization and study skills, but are there other ways to help this without medication?  Or are her other emotional issues so great right now, that we should go ahead and start treating the ADHD so her little brain can focus on one difficulty at a time?  That's kind of where I'm thinking right now.

Squirrel also sees a therapist for counseling.  He doesn't completely agree with the psychiatrist's diagnosis.  He says she has a serious anxiety disorder, but he thinks she's also experiencing periods of mania and depression.  Are we possibly looking at another diagnosis here?  Both depression and Bipolar disorder run in the family, so there could be a genetic predisposition to it.  He also doesn't see the ADHD at all, and thinks the obsessive thoughts are more an issue (from the OCD).

And then there's the neurologist, who gave her the primary SPD diagnosis, and yet that is the one we're not doing anything about.  I've been trying to get her evaluated by the school district, but because she's in a private school, it's not going anywhere.  The SPD is not enough to get services, but with the emotional problems and the ADHD, she definitely qualifies.  The problem, of course, is her "superior genius" IQ.  Since she's not struggling academically, the schools are not concerned.  So that leaves us trying to find private OT and social therapy, which insurance won't cover.

Is it any wonder I'm having trouble accepting Squirrel's diagnosis?  No one can seem to agree what it is!  Or which part of it warrants treatment.  And since we're dealing with both neurological issues and mental illness, she has to see several different doctors.  It is quickly becoming evident to me that the treatment of mental illness is not an exact science, but more of a science experiment--especially with children.  Try this drug; if it doesn't work, we'll up the dose.  If that doesn't work, we'll add this drug.  My poor Squirrel is on a roller coaster already--now we're introducing drugs whose side effects sometimes intensify the roller coaster.  She missed two pills in a row a few weeks ago, and sank into a dark depression/aggression like I'd never seen before in her.  It was scary to watch and walk through with her, but imagine how terrified she must have been to be so out of control of her own body!

Anyway, back to my thoughts about diagnoses and labels...Some people have questioned my judgement in pushing to have my children "labeled."  They don't understand why it's necessary.  They see my children, and think they're "fine."  Someone even said, "I was like that as a kid too, and I turned out fine."  Well, I was just like Squirrel as a kid, and I was far from fine.  I remember the struggles to understand why my body didn't feel right, and I especially remember the low self-esteem and self-hatred that plagued me as a teen.  I was an adult before I was diagnosed myself with an anxiety disorder and depression.  That's why I had Squirrel evaluated and diagnosed.  And it's a good thing I did!  I had no idea how much she was suffering!  I know how bad depression feels--you can't imagine the weight you carry unless you've experienced it yourself.  Now imagine being 9 years old and carrying that burden around.  It breaks my heart.

And Munchkin?  Well, he's in the special education program at school because of that diagnosis.  Like Squirrel, he has an extremely high IQ (not yet tested, because of his age, but evident all the same).  When I initially went to the school for an evaluation, they said he was too smart to qualify for any services.  When I went back six months later with a paper in hand that had a diagnosis written on it, the doors all opened to me.  He now receives services and specialized instruction to help him succeed.  Without that, I have no doubts that he'd be failing in Kindergarten.

Someone once told me, "If you don't label your child, the schools will.  And the labels they'll give them will be trouble-maker, wild child, unmotivated, lazy..."  So I'll take the labels, and all the stigma that goes with them, so that my children can get the help they need and succeed in life!

1 comment:

  1. I just stumbled on your blog after seeing your comment on a post at the SPD blog. I look forward to reading more when I have a bit of time. My husband and I were just talking about the label thing last night. We are currently walking the road of getting "labels" for our sons and it's not been easy. The best advice I've gotten is the reminder that labels are simply a tool, they give direction and there is nothing wrong with that regardless to what someone else thinks.