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Tag Archives: advice

Mixed messages

10 Dec

There’s this phenomenon that happens when your child is being evaluated for any sort of difference.

You are inundated with mixed messages.

Pelted by. Poked with. Swimming in. Slapped repeated by.

Mixed messages.

On the one hand, you’re told “Accept your child for everything they are!”

On the other hand you’re told “What’s the cure for your child’s issue?”

On the one hand, “Relax! God doesn’t make mistakes?”

On the other hand, lists of questionnaires from doctors asking you how you might have caused this during pregnancy.

One hand, “Your child is perfect the way they are.”

Other hand, “I could never handle a child with issues.”

And so on, and so forth, world without end, amen.

This is what I got for…oh…probably three years of Maura’s life. I still get it at times, but for three straight years or so, it was constantly there.

I was told to accept my daughter but cure her, because I shouldn’t really accept her as disabled. I was told to calm down, but that I wasn’t taking this as seriously as I could be, as I should be. I was told it was great that I was laid back, but good moms are Warrior Moms. I was told not to be dramatic about things. I was told how having a child like mine was too hard. I was told having a child like mine was easy. I was told she would catch up. I watched her fall further behind. I was told that everything had to happen by age five or else she’d be behind forever. I was told how that wasn’t true, that development could happen well into her twenties. I was asked “Was there anything that happened during your pregnancy that could have caused this?” in a dozen different ways. I was told not to give up hope. Evaluations hade her sound more disabled than anyone gave her credit for. I was told that I was the expert on my child. I was told that they knew what was best for her. I was told to trust my instincts while everyone around me told me how those instincts were wrong. I was told I wasn’t doing enough. I was told I wasn’t investing enough time in my child. I was told to take time for me. I was told they couldn’t help us.

I was told a lot of things. 

So many things. 

It’s amazing, the moment you say “I think there’s something wrong with my child.” how everyone comes out of the woodwork with an opinion on what you should be doing. Most of those people aren’t their to actually help though. They’re just there to plant a seed of doubt in your brain, which is already an acre of doubt and doesn’t need more seeding.

I don’t know when it stopped with Maura. Maybe when she developed epilepsy? People take seizures pretty damn seriously, and it’s something they know, and is real to them.

Maybe it’s when I was able to stop taking all the “advice” thrown at me. Like when one preschool mom told me the key to potty training was consistency, and I just needed to be consistent with Maura. I told her she could come over to my house any time to help out.

She never did.

But I knew she wouldn’t show.

It was all around the time Maura was four. A year into therapy for myself, three years, multiple tests, and MRI and EEG for Maura.

Three years of mixed messages being thrown at me, I was finally able to send a message to the world.

“I got this. I’m the expert on her. I don’t care what your opinion is. No, I’m not going to rub her down in essential oils because that won’t fix her brain. What’s on paper doesn’t matter, and doesn’t tell the whole story. She is who she is, and if you don’t like that, there’s the door.”

So to you moms and dads who are starting a journey of your own, be warned – there are many many many opinions out there. People will tell you what to do, how to do it, and what to feel. They will be everywhere, and they love to give their opinions unsolicited.

Here’s the thing – 

You don’t have to listen to them.

Just nod, smile, say “That’s nice, but we’re going to keep doing our thing, thanks.”

You do you.

Your path is your own, and you can hike it however you want.

 

 

 

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[image description – My two daughters, both about the same height, walking through the woods, on a dirt path, the sun shining down on them]

 

 

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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 –

Im-so-so-sorry

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.

 

 

 

Four words to my 17 yr old self

27 Sep

“Keep being different.”

That was my response to this particular Facebook mindlessness. (BTW, I love FB Mindlessness, it’s a nice break from having to read yet another political ugliness thread.)

I wasn’t just being a smart-ass…which, sure, I was. But I thought about it for a moment, thought about that 17 yr old girl that I was, and what all she’d been through. How she always stood out, if by being the shortest, or having a speech problem, having weird skin, having odd clothes, having a name even the teachers didn’t pronounce correctly.

Nope – there was no way young Phoebe was ever going to be a conformist, nor was she ever going to blend. Not with that name. Not with that speech problem. Not with that hair that refused to accept perms in the 1980’s. Not when her friends were listening to Poison and NKOTB and she was all “OMG, have you heard of this group called 10,000 Maniacs?”

At 17, I was a high school senior, coming into my own a bit. Life wasn’t easy, but I had dreams and plans and a total lack of giving into peer pressure. I look at my 17 year old self and see someone who’s about to take on the world, start a new season in life, start a bigger journey that would lead her to where I now sit today. I see a girl willing to take a chance to leave everything behind and start anew, in a place where no one knew of her past, of her now-corrected speech issues, of the rejections she dealt with in the middle school years.

I still remember my 17 year old self starting to be a bit bold. I remember it clearly. It was the day of high school graduation rehearsal and this boy I’d known since first grade, this boy who’d I considered my friend until the Great Social Outcasting of Seventh Grade. Since 7th grade, he’d ignored me, or pretended I didn’t exist. And I saw him, as I walked with my friend out of graduation rehearsal. I saw him ignore me yet again. And I heard myself say loudly to my friend “You know, I’ve known him since first grade. Do you think he’s said “hi” to me even once in high school? Nope. It’s like I’m invisible or something. Isn’t that weird?” *not exact phrasing because even my memory isn’t that good

My friend gaped at me as she tried not to laugh. The boy turned red, because he heard me…because I meant to be heard. And I had this out of body experience of “Wow, I can’t believe I just did that” along with “Dang, that felt good to get that out.”

The adult I am now does admit that doing that was probably a bit rude.

But I was seventeen.

Maybe the advice I should have given my 17 yr old self was “Don’t be too rude.”

 

Instead, I’ll keep to the original answer of “keep being different.”

Trust me, my 17 yr old self, someday, a guy WILL appreciate that about you.

(Me, at 18...close enough though, right?)

(Me, at 18…close enough though, right?)

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