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19 Dec

Herding Cats – An idiom denoting a futile attempt to control or organize a class of entities which are uncontrollable or chaotic

…like my life.

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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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Choices

24 Nov

I was sitting on the kitchen floor, trying to muffle my crying, when my husband found me that Christmas Day about ten year ago.

“Oh my God, what’s wrong?” he asked, his voice full of concern.

My response was a babble of how the kitchen was a mess, how I had spent hours cleaning it for two days so I could have it clean for Christmas, but because my husband and kids decided to make a big breakfast Christmas morning, the kitchen was now a mess again – flour on the counters, dirty pans on the stove, and I was faced with more cleaning before having to prepare Christmas dinner  – which then I’d have to clean up after.

All of this between sobs and whining noises that only the dog could hear.

It was an epic, and well-earned, meltdown on my part. That past year, we’d been coming to terms with the fact that our youngest wasn’t just developmentally delayed, she was disabled. She was disabled to the point that she would probably always need to live with us. Just a couple of weeks before Christmas, she’d been diagnosed with epilepsy. I’d fighting depression and anxiety all year and trying to dig my way out of the messy house that came with it. Having the house clean for Christmas had been important to me. A clean house meant that I had my stuff together, that I was getting control of things, that I was a better mom than what I thought I was. A clean house meant a whole lot of things that it didn’t really mean, but it was important at the time. If my house was clean, then it wouldn’t bother me, and I could relax and enjoy the holiday.

I really wanted to enjoy the day.

Instead, I was sitting on the floor in desperate need of a tissue, hyperventilating.

My husband, who was now also sitting on the floor, apologized for messing up my clean kitchen, and offered to take care of things. I hiccupped about how I still had to cook dinner, and things needed to be started asap or else they wouldn’t be done in time, and maybe how everything was impossible because at that point, everything seemed impossible.

“How about we just order Chinese food?” he suggested.

I blinked at him.

“The kids don’t care about the food, and it’s just us anyway. It would be easier.”

A week later, as I told this story to my therapist, I got to this point, and she leaned in. “And what was your answer?” she asked eagerly.

“I told him to see if the Chinese restaurant was open.” I said.

“Yes! That was the right response!” she cheered.

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And it was. It was exactly the right response. I was there, crushed to the floor with the burden of making a perfect holiday, and was given an escape route. I could have forced myself to reject the easier path, to pull myself together and make the damn Christmas dinner.

Instead, I chose the easier route, and in doing so, I chose to enjoy my day.

I can’t remember if the kitchen ever got cleaned or if we decided to just ignore the mess. I do know that the Chinese restaurant was open, and the kids thought it was great to get Chinese for Christmas dinner. Afterwards, I sat on the couch laughing with our youngest while the older three and my husband had an epic Nerf gun battle through the house. For months afterwards, we found orange darts in odd places.

I had given up my idea of what it should be, and embraced what the day could be.

The kids remember it as one of the best Christmases ever.

Go figure, so do I.

Life is funny – you grow up thinking if you just go to school, find the right job, marry the right person, have babies at the right time, that things will go well for you, and there you are on Christmas Day, with the perfect turkey cooked perfectly, the centerpiece of your perfectly laid out table.

But that’s not how it works for most of us, and you’ll find yourself faced with choices. Complicated, messy choices that are hard. There is no getting around those. Some choices are made for you and you have to go along with them.

And sometimes, you are faced with a choice that is almost ridiculously simple, and yet can change everything. They are the choices that end up as the memories we cherish most.

So as we head into this holiday season, I hope you all are able to make a choice that’s easy and that brings joy. 

 

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Photo by Ben White on Unsplash

 

The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

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Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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