Labels

Tuesday, September 11, 2012

I'm not a huge fan of labels.  I'm "me" and that should be enough.  I'm quirky and bitchy and funny and (let's face it, I'm perfect, am I right?) all sorts of things that no single label could hold.  I'm a wife, a mom, a daughter, a friend... The list is endless, so why bother labeling at all?

When I shared Bobby's evaluation with the IU and our decision about holding off on IU intervention and just seeing how preschool goes (I'll post about day 1 soon- I promise!) with the addition of private speech therapy (first appointment is next week!), there were questions from people, both those we know in real life and those from virtual communities, asking why we didnt purse a label for Bobby in order to try and get other services, etc.  Why would we purposely avoid a psychological evaluation that might open up other avenues of services?  As I communicated with other moms, especially those who had children labeled as 'special needs' of one sort or another, I heard things that sounded a lot like I was ignoring a label for my own sake, as though labeling Bobby as "delayed" or any other thing would somehow make me a bad mother and, because I dont want to be a bad mother, I'm not doing my best for him by having him labeled.  (The two emails that I received on this note were not publishable comments; several people shared their stories with me, both via email and via comment, and how they went about getting a diagnosis for their kids, and those were very helpful.  What I'm referring to are nonconstructive comments.)

Really?

I'm a lot of things, truly, and I'll be the first to admit that my parenting skills dont get a gold star every day.  I love my kids with my entire heart and soul, but just like any other person, I lose my patience from time to time, I want to lock myself outside the house and scream periodically, and I run to let off steam because I am a sensory oriented person who gets more and more bitchy the more tightly wound I get (and, sense I bubble over when I get mad, running is a great outlet to poor that steam into).

But avoiding a label for the sake of not wanting to be considered a "bad" mom?  Because if my kid had a label it would be a reflection on me?

He has brown eyes (clearly a reflection on his father) and a short fuse (clearly a reflection on me).  There's a lot to Bobby and Maya's personalities that mirror ours, both in positive and negative ways.  I'm not sad about it; it is what it is.  They are (and we are) who we are.  I just dont feel the need to slap a label on it.  (Well, short of the "Irish temper" label...)

A friend of mine send me a link to an article on The Awakened Parent recently, and I have to tell you, reading it was like opening a window and letting a breeze blow in. One of the things that Peter and I have mused on is, regardless of the challenge or difficulty, trying our best to tell our kids to just achieve their personal best.  Maybe that's an "A" on an exam, maybe it's an "F".  If you are doing your best, that is that.  I run; I'm not fast, but I dont care.  I'm giving my all and doing my best.  It's all I can ask for, and it's all I can ask for from my kids.  Saying that Bobby has a speech delay is, for us at least, not labeling him, it's just saying what is.  Relationally, his speech is delayed off the average of a (now) three year old.  But it's not bad; it's just what is.  To help him acheive his full potential, he's having therapy.  He has certain behaviors, like pulling my hair to soothe himself, which are not appropriate, so we are working through them with him. 

I read a book called Children with High Functioning Autism after Bobby's evaluation because I wanted to know if I was somehow missing something; funny enough, it was that book that made me see that while he has some markers, so do most of the kids (and honestly adults) I know (which maybe says something about me!) and he definitely doesnt have enough markers to be labeled as "classicly autistic".  Is there something else there, possibly?  Possibly.  I dont know.  But there was one thing in the book that really hit me hard.  On page 103, she is discussing Jim Sinclair and quotes from his 1993 essay Don't Mourn for Us: "This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."  The author goes on to discuss Mr. Sinclair and his feelings on language, both in phrases like "an autistic person" and "a person with autism". Placing the adjective of autism first defines the person by their difference, while placing it last implies that it is something that can removed from the person.  I highly recommend the book, even if you arent investigating spectrum disorders, because some of the things mentioned are true for all children.  But that quote...

"This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces." 

Never do I want my children to believe that I want them to be someone other than who they are or that anything about them- be it their eye color or some unlabeled difference or anything else- is something I'd change.  I want them to be them.  I love them for them.  Labels or not, they are mine and perfect in all they are and arent.  Reading that quote was like a hit to the gut and made me realize once at for all that regardless of if Bobby or Maya are ever diagnosed with anything, it wont matter because they are themselves, and that's all that matters...  I have dreams for them; I hope they live long, healthy lives and find happiness.  I hope that they find joy, regardless of where their paths take them.  But, I always want to see those brown or blue eyes looking back at me with an internalized knowledge that I love them unconditionally and am proud of them for just being who they are.

***A special thanks to BB for sharing with me the article that inspired this post.  You're awesome!***

4 comments:

Clare Kirkpatrick said...

Sounds like your twins are a very lucky pair to have you for a mother. Any mother who takes their children so seriously is a good mother, in my book.

x

Terri Jones said...

Wonderful post! I don't have to tell you how much I agree! I too have not sought after certain labels because I believe we need to meet all children where they are and teach to meet their specific needs. Don't get me wrong, sometimes it is necessary in order to meet specific need, others it isn't. The quote is heartbreaking.
Thanks for such a great post!

Baby Smiling In Back Seat said...

It was so clear in your earlier post that the reason you are postponing the evaluation right now is to avoid overwhelming Bobby with the start of school plus an eval, especially given the higher-than-it-should-be possibility that the eval will be negative, given the IU experiences you've had so far.

More than most mothers of little ones that I know, you always seem to accept your children for exactly who they are.

Ashley Largent said...

You aren't the only one wanting to avoid labels with your children. This time last year, my almost 2 year old went in for his 9 month check up. And the pediatrician flipped out because my son's head had grown so much (i can't remember exactly how much) in diameter in just 3 months. He referred us to a neurologist and said that it wasn't normal for a baby's head to grow like that. It took two months to get us into the neurologist visit. I was freaking out the entire time, I kept watching him over closely. I already knew that he was a little behind in his speech and he really wasn't pulling up or trying to crawl at this point either, so now he has an enlarged head. All the research I did kept pointing to autism. Boys with larger heads as an infant are sometimes diagnosed with autism later in their toddler years. As my husband and I sat up all night (many a nights lol) talking about this, we both agreed that we didn't want him labeled just yet. We didn't want to go through evaluations and testing just to be stuck with a label that will follow him around for the rest of his life. Because to be honest, my husband has several autistic traits, so why can't his son? lol
Oh the appointment with the neurologist, lets just say he laughed at us, as we laughed at ourselves. He measured Braeden's head and said Yep he's got a big noggin. Then measured my husband and my head. My husband's head is 4 cm off the chart for grown adult males head circumference. Yeah he has a big head lol The doctor said that he would be more concerned if Braeden had a small head than a large head. He said to watch him and if at any point we were concerned about anything to give him a call. My son was 16 months old before he started walking, (way later than his siblings). And he is just now really starting to talk at 20 months old. So yes he is delayed, but he isn't labeled. I don't think anyone needs to know that he didn't speak in 5 word sentences until he was 4 (look at Einstein for instance). As long as he is smart and progressing normally and understands things, I wouldn't worry about any evaluations at the moment. I honestly feel that you are doing the best thing for Bobby. You are exposing him to other children, he is getting speech therapy and you are openly communicating with his preschool teacher about his quirks and ticks. You are doing wonderfully.