When it’s not…

“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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