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Tag Archives: special needs

Please don’t say “I’m sorry”

31 Jul

It happens often enough that I brace for it. I say “My daughter has special needs” or “My daughter has moderate cognitive disabilities” and the person I’m explaining it too suddenly channels David Tennant playing Doctor Who –

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Seriously, this happens a lot.

And I often wonder – why are they sorry? And then I remember – because the world thinks being disabled is, like, the worst.

So I try to assure them that we’re cool with it, but they keep saying sorry.

Listen, I get it. You think you’re being empathetic. To an able-bodied person, becoming disabled sounds awful. To a parent, having something “wrong” with your child seems to be the worst thing that could happen. You think you’re being kind, being thoughtful, being sympathetic to what you perceive as our burden, our cross to bear, our struggle.

So I’m here to tell you – just stop it.

No, really, stop.

It’s an awful way to respond.

You say sorry as if it’s awful to have a child like mine even when you haven’t met said child. Because if you had met my daughter, you would know that her life is awesome and fabulous, just like my daughter. It’s not a life to be pitied or to cry over. It’s an awesome life lived fully. She loves and is loved.

When you repeatedly tell me how sorry you are that my daughter has disabilities, you may not realize that you are implying that maybe you think she shouldn’t exist. Because in a Perfect World, there’d be no disabilities. In a Perfect World, every child would be born able. You may not mean to say you’re sorry my daughter exists with all her disabilities, but you unintentionally imply it.

And that’s just not cool.

So, what can you say instead of “I’m so sorry” when I tell you my daughter has disabilities?

“Oh, tell me more.”

“Oh, okay, want more coffee?”

“I’m totally not good with these things and don’t know how to react but I’m sure your daughter is every bit as fabulous as you.”

The best answer I’ve ever gotten came from one of the movers when our stuff arrived in Ireland. Maura was so excited to see our stuff had arrived, that she ran up to the head mover and babbled excitedly at him. His eyebrows raised slightly, because she didn’t use anything close to English in her babbling. I decided to give the disclaimed – “She has some special needs.”

The man shrugged. “Ah well, there’s nothing wrong with that.”

And he was absolutely right.

There is nothing wrong with having a disability, or having a child with a disability.

So please, stop telling me how sorry you are.  It’s all good here.

 

 

 

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A backpack of one’s own

9 Jun

“That’s mine!” I stated with some resignation mixed with frustration. Because once again, Maura nabbed something I bought for myself and claimed it as hers.

This is an ongoing problem. Maura doesn’t differentiate between the stuff that is hers, and the stuff she wants to be hers – to her, it should all be hers. I buy myself new shoes? She’s trying them on. I get a maxi skirt at Target? She’s wearing it before I’m done unloading the car. I spend three months searching for a good backpack for myself to haul my writing gear in because she took the last backpack I bought? She’s got it stuffed with tutus and on her back without me even realizing she’s taken it from the place I thought I had hidden away.

It’s not just my stuff. She gleans from everyone. Collin was missing his wallet. We started searching. I found Miriam’s wallet in one of Maura’s backpacks before finding Collin’s in another of Maura’s backpacks. Sean was missing keys on a lanyard. Maura had them. Josh didn’t even know when Maura nabbed $120 in cash from his bag. No, that one, I got an email from Maura’s teacher with “So Maura brought in a Dooney & Burke purse with $120 in it. I’ve locked it in a cabinet until you can come retrieve it.”

The purse came from the thrift shop. I’ve yet to use it because every time I turn around, it’s in Maura’s room.

It’s frustrating, and something that we’re still trying to teach her, to make her understand. Our stuff is our stuff, even if she wants it. Other people’s stuff is other people’s stuff, even if she wants it. Just because she wants it doesn’t mean she can claim it as her own.

But she doesn’t get this. Which is why, as Maura and I were leaving my friend’s house, I searched her backpack. And found two things that didn’t belong to Maura. Once home, I found two more things that belonged to my friend in Maura’s backpack. It was disappointing – because Maura choose to steal books when I know my friend has a fantastic jewelry collection. Luckily, this friend also has a fantastic sense of humor and applauded Maura in her choice of books (an art history book and “The Agony and the Ecstasy”).

It’s not easy though when you live with this every day. Every day, she’s swiping a sibling’s possession, sometimes one they need, like their wallet or their cell phone. Maura has two of her own wallets, but she wants her siblings. She wants to take Miriam’s sketchbook, even though I have given Maura her own notebooks. She wants my legal pad full of notes, even though she has her own legal pad. We can provide her with things, but she wants more, she wants the new stuff that comes in. She has little self-control over it at times.

Which is why, despite owning several backpacks of her own, Maura last night swiped my new backpack again. Even after I explained that it was mine, and she understood that explanation enough to be unhappy about it. I didn’t see her swipe my backpack, Josh found it tucked away in her room this morning. He quickly hid it while she was in the bathroom and made her choose one of her own backpacks.

I don’t know if this is a phase or not, but even if it is a phase, I am braced for the fact that it is a long-term phase. Maura goes through phases slowly, so this compulsion to take other people’s stuff? Could last years. Some days, I’m okay with that. Other days, it’s just really tiring.

But for now, I’m just going to stake this one claim on this one backpack I bought for myself.

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Even among the extraordinary, we’re still a bit ordinary

7 Jun

“Medical science is just not interesting in kids like your daughter.” a neurologist once told us.

What I’ve come to learn is something I’ve always sort of known. We’ve never been interesting enough.

Sounds silly, because if you’ve met us, you know, we like to keep things different. But when it comes to disabilities and special needs, we’re kind of bland.

Oh, don’t get my wrong, I’ve always been thankful for the blandness of Maura’s issues. Having bland disabilities means she’s healthy and happy and able to do so much. Ironically, that’s what makes us a bit uninteresting.

Maura’s needs have never been sexy or trendy enough to get interest from the medical community. Maura’s disabilities are too generic for strangers to really care. We have no big diagnosis story to bring out. I can’t tell you what it’s like to have a doctor reveal The Something Maura Has – because we’ve never figured that out.

Reality is, for the first five years or so of Maura’s life, everyone downplayed Maura’s disabilities. Told me I was overreacting, that Maura would be fine. By the time we all realized she wasn’t going to be fine, we were all used to things the way they were, and there was no crisis moment to deal with.

And yet, I can also look back and realize that part of our perceived ordinariness is my own fault. I was raised in a “suck it up kiddo” atmosphere. If you skinned your knee, you grabbed the Bactine and a band-aid and dealt with it. When the choice is either laugh or cry, I choose to laugh. I was trained not to show my darker feelings. I still don’t show my sadness. I will joke at a funeral before I’ll cry at one.

So there I was, being calm through it all, finding the humor in situations, carrying on with life, and embracing each new thing thrown at us. While other people would mourn the introduction of ankle braces, I was giddy about them. Maura needed the support and when we got them, I was happy for the difference they made. When she developed epilepsy, I remained calm, and within a few weeks, noticed so many developmental gains that I all but hugged the bottle of seizure medication for allowing Maura to do more.

And Maura was such a happy little kid, smiling with her whole face, always willing to try something new, working hard to keep up with her siblings.

We were a pair – a smiling happy pair. Obviously we weren’t in crisis, obviously life was okay. There were others who needed more attention than us, others with more problems, more issues, real issues.

When I did crack, I would crack spectacularly. One can’t hold it all in and not eventually crack in a normal way. No, I would crack, spectacularly, garnering interest and concern for a moment. But since my life motto seems to be “Never let them see you cry”, I’d dry the tears, take a breath, and keep moving forward.

Outwardly, we were pretty normal. Yes, eventually, everyone got on the same page that Maura, indeed, was disabled. But getting to that point took years. Not a day, not months, years.

And so, even in our extraordinary life, it all became ordinary.

Because we treated it all as ordinary, people followed our lead and treated it as such. Because we didn’t make a tragedy out of things, no one else did. Because we included Maura in everything, people accepted her presence where ever we went.

And those are all good things.

But, in doing all that, we’ve sort of been seated in the back of the room when it comes to families with special needs. It seems like I’m complaining, and I know, I shouldn’t. But dang if at any point, I could have used a meal train or someone coming to clean my house or just watch my kid.

Instead, I ordered a lot of pizza, had a messy house, and dragged four kids about town. Because stuff still had to be done. Life still moved on, and no one was going to help us out. I wasn’t one to ask for help – I’m still not – so again, some of the blame for not having any help falls straight onto my lap.

I guess I make the extraordinary look ordinary, and Maura has inherited that skill from me.

The fact is, more people find the fact that we lived in Ireland more interesting than Maura’s disabilities. I don’t know if that’s a good thing or not. Or maybe it’s because she doesn’t have a diagnosis that we aren’t as interesting as something like autism, which gets all the press time, or Down Syndrome, which has a lot of warm fuzzy media coverage. No diagnosis that affects one lone girl isn’t as interesting as a syndrome that affects 1 out of 100 kids. No one noticed when Maura’s seizure meds tripled in price, but raise the price of an EpiPen and people lost their damn minds (for good reason.)

Maura’s disabilities affect her, and her family. They don’t really spread to the wider world, not in a way anyone can test for. Not in a way medical science is willing to study and decipher. Not in a way the public can do an awareness walk for, or have a cause to donate to.

And I am grateful for that. Maura has health and happiness and the ability to go where ever she pleases.

But while we go about our ordinary lives here, please, don’t forget, it’s also extraordinary.

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