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Tag Archives: diagnosis

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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Don’t be like Barb

23 Jan

Yes, I understand that this presidential election has been especially contentious. And yes, I also understand that we are very divided by our choices.

But when it comes to name calling, can we leave some things out of it?

See, yesterday, I was scrolling through Facebook when one of those “Your friend commented on a public page’s post” thing. The post was about Ashley Judd’s slam poetry performance at the Women’s March. I watched it before, it was interesting. Slam poetry isn’t really my thing, but this one held my interest.

It held a lot of people’s interest.

It was reposted by some Facebook page with some name that gave its political leanings. There were a lot of “OMG she’s trash” and “I will never watch her again!” type comments. People didn’t understand that it was slam poetry, so without that tidbit of info, I can get why they thought she was just randomly ranting.

Now, I don’t usually comment on such things, because as we all know, posting an opposing opinion on such a thread means you get 78 notifications about how you must be stupid, and are most definitely wrong.

But my friend posted, which put it in  my feed. And the comment she posted on caught my eye.

A woman named Barb (Not My Friend) posted this – She sounds like schizophrenics I’ve met doing service projects in locked mental wards.

And my face went like this

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My friend pointed out that it was slam poetry. Me? My hackles got up. And I said this – Maybe you should rethink doing service projects in mental wards if you’re going to use schizophrenia as an insult.

My friend backed me up – so much yaaaaas 

Not My Friend Barb tried to defend herself –  Schizophrenia is a medical condition. It is not an insult, that I’m aware of.

And I was like

pope ohnoz

Then I responded with – and yet the way you use it IS meant to be insulting.

A woman reading slam poetry that you disagree with is not the same as schizophrenia. Comparing one to the other is insulting and shows lack of compassion.

Barb deleted her comment. I know, because another cool friend of mine commented on it, and I was notified of it, but when I went to read it…poof…all gone.

But let me reiterate what I was saying to Barb –

When you use a medical condition in an insulting manner, it is STILL insulting.

We all know the famous one – calling someone “retarded” (and yes, you can still find the words “mental retardation” in medical files. Ask me how I know.)

But calling someone schizophrenic, bi-polar, autistic, etc, as a put down, it’s insulting. When you use it as a negative comparison, it’s insulting. Plain and simple.

And when someone says “Wow, what you said is insulting.”….do me a favor…don’t say “No it’s not.” Instead, put your listening ears on, and maybe ask “Why?”

Case in point –

Years ago, I was on a message forum for parents of children with special needs. The needs were varying, as were the parents. One day, one mom said something about “spazzing out”. Another mom stepped in and said “Please don’t use that term, it’s a derogatory term that comes from “spastic” and it’s insulting to my child, who is actually spastic.”

The first mom didn’t say “Well I didn’t meant it like THAT.” No, the first mom said “Oh my gosh! I’m sorry! I never thought of it that way. Thank you for letting me know!”

And the other mom was like “Okay, we cool. Thanks for listening.”

Because you know what? There are words and terms that were once, or still are, insults. I don’t claim to be perfect on them all either, but I’m willing to listen and try to do better next time.

I get it. These are trying times. We should all take the high road, but we don’t. We support our cause vehemently, and sometimes, without being thoughtful. Yet we need to sometimes take a step back and think before typing – or maybe decide not to type at all.

I don’t know if Barb got what I was saying. Maybe she did, maybe she didn’t – she ended our conversation before I could find out.

What I do know is that Barb should probably find a new service project because she doesn’t seem to have enough compassion for the people she’s been working with to not use their diagnosis in an insulting manner.

Maybe she could clean toilets.You can do a lot of thinking while cleaning toilets.

 

 

 

When it’s not…

18 Oct

“So…what does Maura have?”

I have been fielding this question for nine years.  It probably first came out of my mouth in a doctor’s office.  These days, it is asked by those meeting us for the first time or so.

The answer is always “We don’t know.”

In the past, that led to “Well have you tested for <insert well-known issue here>?”  Nowadays, it leads more to “What do you mean they don’t know?”  or just “What???” but suggestions always still come.

The plan fact is, we don’t know.  Doctors don’t know.  We’ve gone down all the normal avenues and have come to dead ends.  We could just start playing Russian roulette and do a muscle biopsy in hopes that something else might appear – but those are painful and quite invasive.  Why do that to her on what would basically be a whim?

So we’ve learned to embrace the non-diagnosis, and do the best we can.  We appreciate the fact that she is really healthy and happy.  We modify our lives when we need to, and go with the flow.

But there is the downside to this life.

In a weird way….you always kind of feel left out.

You’re left out of the medical field. There is no researchers trying to find a cure for Maura.  Whatever she has, it’s not that sexy, and has no funding.

You’re left out of support groups. There are no local groups to help lead the way, so you flail along the best you can.

You’re left out of a “Cause”. There is no one but you fighting for your child’s cause/rights/needs – it’s all you, all the time.

And at times, you’re left out of the disability world. Not on purpose. Your child just becomes somewhat…invisible.  Everyone else has their groups, ribbons, and causes to keep them busy, their own fights, their own worlds.

A year ago, the state of Michigan was determining whether or not to make it a law that insurances must provide coverage for autism therapies – and by autism therapies, they meant occupational, speech, and physical therapies.  All of which Maura has taken part of, because she needs it.  Since she does not have autism, this new law would do nothing for her.  It made me wonder – why only children with autism?  Why not make insurance companies cover these basic therapies for any child who needs them?

Right now, there is a big uproar over the change in rules for Disney park visitors with special needs. I am with them on this one, as it would affect us as well if we were to go.  It is a huge deal within both the autism and special needs communities.  My fear is that there will be a rule change to make things easier…but only for those with autism.  Which means Maura wouldn’t qualify.

There was also a huge deal made when Target had a child with Down Syndrome in their ad.  But it made me realize that if there was a casting call for the next top child model with disabilities, Maura wouldn’t make the cut.  Let’s face it,  invisible disabilities don’t photograph well. She looks too “normal”.

Sometimes, it all makes you feel like a fraud.  My child is too healthy, too normal, too happy, to able to be labeled disabled.  For a long time, I wasn’t quite sure I could call her that.  Silly, I know.  But no one else referred to her as disabled.  Not teachers, not doctors, not other special needs parents.  She was just Maura.  Her IEP even had “developmental delays” as its reason for being – as if still giving her room to catch up, long after we all knew that wasn’t going to be a possibility. I’ve been told how I don’t understand the devastation of a label, how we shouldn’t let a label define our child, how labels are limiting.

As someone living in a world without labels, I see it a different way.

Labels give you direction.

Labels gives you comrades in arms.

Labels open doors.

What’s funny to me is that those yelling “Labels don’t define MY child!” are the biggest wavers of the banner – they’re doing walks and awareness months and have the ribbon on their car.  So really, while you may not like the label, those with one do embrace it to a degree.

I never realized how label-centric parents were until we moved to Ireland…where suddenly, the question of what Maura had wasn’t that big of a question.  We became part of an organization that supported people of all ages with special needs – label not needed.

It was an eye-opening experience.

It was also very overwhelming at first.

I can admit it now – I walked into the special school the first day and was completely overwhelmed.  Here was this school filled with children of all ages, with all different needs, all in one place because they fell into the “moderately disabled” category.  I had never been around so many people with special needs before.  The closest was the one special speech therapy, where it was Maura and four boys with autism, but that was all orderly and scheduled, a well-trained staff moving in synchronization.

I found myself in this hive, buzzing with kids and noises and staff, and I wasn’t sure I could send my daughter there.  My bright beautiful girl – did she really belong there?

That was the day when it truly hit me – my daughter was disabled.

No one had ever really said it before.  Without a convenient label, we were left floating in the unknown.  Her school in Michigan mainstreamed her, and had kept taking away therapy times bit by bit, because she “didn’t qualify” for more.  Maura doesn’t have behavioral issues, so she was easy to blend in with the other kids.

We were able to pretend a bit that maybe things weren’t as bad as they seemed.  Mainstreaming allowed us to create an illusion.

It was sort of as if we were lied to, and we embraced the lie.  But we weren’t lied to – we just fell into a crack.  That crack where many of the other “diagnosis unknowns” fall into.  This lonely plane, where you try to gauge the future without any guidance or map.

But that day, coming out of the school, all I could think of was “Maura doesn’t belong there.”

I can at least smile about that now.

When you read blogs by other parents of special needs children, there will be a post about “The Day We Found Out” – about how they were confronted with a diagnosis, the evils of a label, the denial that this is what’s really going on with their child, and eventually, the acceptance.  I have watched friends come back from evaluation with that slightly shocked look of acceptance and a label in hand.

People like us have never had that day.

Imagine starting a journey with “I think we should run a blood test…”, waiting two weeks breathless, scared out of your mind, only to hear “No, it’s not that…so maybe we should try this…”  and having to go through that over and over again, to the point where you find yourself disappointed when the tests come back normal.

I did this routine for seven years before walking into that school in Ireland.

I left that school feeling somewhat emotionally bruised.  Was my daughter really that disabled?  No one had ever said that. Sure, the evaluations did say she was, but people didn’t.  If anything, I had heard “She’s not that bad off.”  And I would agree.  Teachers would focus on the positive, all that Maura had accomplished.  Evaluators told me “Now, what’s on paper isn’t an accurate description of Maura.”  And I would agree.  Maura was just Maura, happy and amazingly self-sufficient – she wasn’t considered that bad off.

To hear “Your child falls into the moderate range of disabilities” is one thing.  Having a visual that was a school full of people with moderate disabilities suddenly made it all hit home.

It got real.

I made my husband go back for a second visit.  This time, I could see the school for what it was – an amazing resource for my daughter.  She was accepted with open arms as one of the kids, no one really made a fuss over what label she might or might not have.  We got to know several of the parents there, and no one really cared what Maura had, we all had kids with special needs and that was good enough.  We all had trials and triumphs, we all could sympathize with each other, understand what the other was going through, share stories and resources.

Everyone was accepted.

Everyone was included.

No labels were necessary.

No one really cared what Maura had – we’d explain “Oh, she has special needs” and that was that.

However, we’re now back in the land of “So what does Maura have?”  I have forgotten how much I am asked that question.  Not that I mind – I’d rather people ask and be interested.

But most people don’t understand the full meaning behind “They don’t know.”

I’m not even sure I do.

 

Maura - Fall 2013

Maura – Fall 2013

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