Watching Daniel Bloom

The Power of Labels

Posted on: January 3, 2013

I’ve been planning to write this for a while. In fact, I was sure I’d post an update over the holidays – but something kept holding me back. Now I know why.

Today was hard. Like seriously, crush and pulverize your heart into 1000 tiny little dusty pieces hard. And so today, I’m writing – partly for me (because that’s what I do when I feel like this), partly for my friends, but mostly for all those parents who stumble here and keep reading and write to me and ask me how Daniel is doing (especially both of you who wrote me last week).

So our “number” finally came up for a 2-hr assessment with the developmental pediatrician today (the one we don’t have to pay for, for once), and I went in with great hopes – with good reason.

Daniel has been awesome – I mean just AWESOME – over the holidays. From the moment that he sang his heart out at the JK/SK holiday concert, with a huge (seriously, HUGE) grin on his face, to his insistence on building a “Frosty” in the backyard, and his absolute GLEE at seeing a stocking full of toys…it’s been pure, absolute bliss. It was really the first year he “understood” Christmas, and it was like combining age 2, 3, and 4 into one oversized explosion of happiness for all of us.

As I watched him over the school break playing with his sister – acting out elaborate scenes between the mommy dinosaur, the baby dinosaurs, and the ‘mean dinosaurs’ and hearing him cry out, “No, please don’t eat the baby dinosaurs !!” – I felt increasing confidence that, despite his atypical development, Daniel was making the kind of progress that would put him on a path that would allow him to ultimately catch up with his peers.

Beyond all that, Daniel’s been working with an amazing Occupational Therapist who we hired to work with him at school once a week, and his progress has been incredible. He literally went from being unable to copy a circle and a line in August two being able to copy all the letters of the alphabet and even full sentences in December.

So today, when we walked in to meet this new doctor, I’ll admit that deep down, in that irrational part of my mind (or is it my heart?), I was secretly hoping she’d send us on our way  saying, “You have nothing to worry about!”.

Clearly, that isn’t what happened.

Instead, I heard a doctor say the word that I’ve been dreading in reference to Daniel – the “a” word – the one that goes straight to your throat and makes it hard to swallow. And I gasped a bit and bit my tongue and told myself not to burst into tears in the office because God FORBID Daniel should think he made me cry. And so we kept on talking and I held it together as we worked out next steps and discussed all the things you do in the Doctor’s office when things aren’t quite right.

Here’s the funny thing. It was just a word. Nothing, but nothing, about my bright, loving, intelligent and quirky-funny-in-a-good-way kid had changed. It was just a label (and not even one that has been made “official” – we have more assessments to go through before anything is considered final). Yet that word – that label – holds SO MUCH POWER. It has the power to drop me to my knees, certainly, but far, far more importantly, it has the power to make people decide (without knowing anything about HIM), what he is capable of. At the same time, that word has the power to get him access to equally important services that could make an enormous difference to his future.

I’ve wanted to write about labels for a long time. In fact, I’ve started three separate posts that I never finished on the topic until now. I know there are people out there who question my writing so publicly, and they will now question me openly sharing the possibility of giving Daniel the label Autism (there. I wrote it.). I guess my struggle with labels has never been so intense or relevant as it is today, and that’s why I’m finally addressing it.

I don’t know where we will land in terms of a label for Daniel. The doctor who saw him today was clear that his cognitive skills are strong, as is his spacial awareness (in layman’s terms, his IQ is at or above average, which we’ve heard before). She was also clear that she sees him as being at the “very high functioning” end of the spectrum (if that label/Dx is to be applied following a more complete assessment – aka ADOS 2).

What I do know is that as a parent, the tug of war between protecting a child from preconceived notions associated with a label – and providing them with access to the best care that may be provided by that same label –  is incredibly challenging, and should not be underestimated, especially by someone who has not faced that struggle themselves. I also know that no label will ever, ever, define my child, regardless of how we may choose to apply it (or not).

Daniel 2012 Xmas ConcertFinally, I know that wherever we land on all that ugh-stuff…I know that the kid that comes running up to me with wild abandon screaming “Mommmmmmy” when I pick him up, and who can count to 200, and who loves dinosaurs and trains and cheese pasta and apples…and who sings a ridiculously adorable Frosty the Snowman….well, that kid should not be underestimated. I stand by my word – and I continue to write  here- because as I’ve said before, I promise you, he will exceed all of our expectations.

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6 Responses to "The Power of Labels"

I hear you, and I feel for you. A label is something that is both a gift and a curse. In our case, I have spent years wishing for a label…just so we could define G’s issues as an actual disorder, instead of labelling him a “behaviour kid”, which unfortunately equals bad parenting and broken homes in many teachers’ and parents’ minds. But you’re right; regardless of the label, they are still our amazing, awesome kids. And no two kids on the Autism spectrum, or with ADHD, or with behaviour issues, are exactly the same. And that is what we must fight against every day as parents. It is a tough battle, but it is so worth it! Keep your chin up!

Thank you Colleen – I actually think of you often and know I have a bit of a kindred mom- spirit in you :).

You, your family, Daniel and the words you write bring smiles, tears and awareness to so many of the emotional struggles some of your friends don’t deal with day in and day out like you. Parenting is rewarding (and tiring) on many fronts, and mini moments, daily laughs and achievements from ALL kids are important to celebrate. I personally love that you share the good, better and best of all of those. Please keep at it if it makes you feel like you have a village behind you. Many hugs, Jess

Thank you Jess :)…we all need to know the village is still here, some days more than others. Thanks for being part of mine. Hugs.

I think labels are good. Without one you it much more difficult to get the support you need. One of my best friends is a special needs specialist teacher and she firmly beleives everyone is on the autistic spectrum somewhere, its just some of us (myself included) are further on it than others. When I was at school there was no such thing as autism, I was simply labled as “something is not quite right with that one” and I often had teachers say “you’re not like your brothers are you?”
I know it must be really hard to deal with, but please remember that by having this “label” Daniel will, when he is older, know why he feels the way he does. I just thought I was naughty or stupid or worse.
I know I have autism now, but I have a full time job, my own home and im really, really lucky to have supporting friends and family who love me whatever. Just like Daniel has in you! You are going to fight for him, I know, and he needs that so much.
Please remeber autism can be a gift, you wouldn’t beleive what I can remember!!!!! And I have always loved being that little bit Special xxxxx

love you all lots Laura xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Oh Laura, thank you SO much. Your words and approval – more than anyone’s – means so much to me. You are more than just a little bit special – you are incredible, wonderful, loving, awesome, an inspiration and a gift. Love you so much. xoxoxoxoxoxo

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