My dad has become a pretty regular visitor in our house. He can be counted on to stop by at least twice a week.
He called me last Thursday, our gymnastics night, as I was driving home. He wondered if Tom was home. He (my dad) was in our driveway and had some Raisinets to drop off but since we were home, he said he’d bring them another day.
Sigh.
So I wasn’t surprised when he arrived at 7:30 on Friday night. He didn’t have Raisinets, but he did have some M&Ms for Olivia. She was thrilled.
After an hour of him talking, me nodding in the right places and Olivia lounging on me, she fell asleep on my lap. I brushed her hair out of her face and tried to listen to my dad but he’s sometimes hard to hear. I often wonder if he talks that way deliberately to make sure his audience is paying attention.
It drives me nuts.
But finally, he caught my attention.
He asked, “She can pass for normal, can’t she?”
Huh? I had to really think about what he was saying. Normal? What the hell? I glanced down at my beautiful daughter sleeping on my lap and then back up at my dad.
He was looking at me with something like pity in his eyes.
Oh, hell no! Do not pity me or Olivia. We’re just fine, thank you very much.
“Normal?” I asked.
“Well,” he said, oblivious to my tense tone, “she looks normal. No one even has to know she has a syndrome if you don’t want them to, right?”
I think I know how he meant it. In his world (he’s 72 years old) normal is something we all want to strive for. He feels there is safety in normal. He truly believes that there is happiness in normal.
I know that he didn’t mean to offend me. He wants the best for my daughter just like I do. But I want the best for her as she truly is, not the best for her as others believe she should be.
And ‘hiding’ her syndrome from the world feels like a lie. Olivia is not a ‘normal’ six year old. In a lot of ways she is. And in so many ways she does ‘pass’ for a normal six year old and sometimes that’s more of a hindrance for her than a benefit. When she does something that isn’t typical, people don’t understand, they don’t always give her the benefit of the doubt. Sometimes, she’s seen as immature or bratty instead of just delayed and doing her best.
Our normal is a damned good life and I gently reminded my dad of that. I’m not sure he got it, though. He’s pretty stuck in his ways. Besides, knowing him, we’ll have that same conversation three more times in the coming months. And each time, I’ll tell him the same thing. Eventually, it’ll sink in.
I hope.
A mom, a dad and two daughters. We're living ordinary lives with a twist of 5p- (Cri du Chat) for spice. But we're about so much more than our younger daughter's genetic diagnosis.
3 comments:
I know that "high functioning" and "passing for 'normal'" are not all they're cracked up to be. It can actually be much harder in some ways.
When we first were coming to terms with the 5P- diagnosis, at a Conference, we met a boy whom we could have a conversation with, walked easily, and showed little sign (at least to us) of 5P-. While the experience gave us hope that our daughter may very well walk and talk some day, it made me reflect on visible vs. invisible disability, and whether it even mattered if our daughter looked the part.
You see, we also have an older child with HF ASD. We know the terrible difficulties he's had, growing up, looking "normal" and being expected to perform as such. For a long time (15 years!) we didn't even know that his subtle "quirks" were related to autism. Once he and everyone else had this understanding, life improved dramatically. He is now an adult and has been successfully employed (and promoted!) at his job of several years.
So, now that our daughter is 10 and is supposedly in the "severe to profound" range of disability, I can really appreciate that HF is not necessarily a bed of roses. I think the kind of worries we have may be different, but no less significant.
I agree with Kate. There were kids where I taught high school who looked "normal" but the kids didn't understand why they acted the way they did and it was terribly rough for them. I think our girls are just perfect!
I have learned recently that "normal" has many variations. I see my daughter as normal, she was born with 5p- so it is not abnormal in our world.
I understand where he is coming from, my grandmother used to often say that Sophie looked normal when she was a baby and ask me if I was sure she did have something. And I had an aunt who used to always push the "will she look normal" which sent my husband off his nice horse once.
It's the era they come from where the stigma of having a loved one different from everyone else is bad.
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