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


10 Responses to “When it’s not…”

  1. plf1990 October 18, 2013 at 12:22 pm #

    I don’t have a disability, however, I do have mental health issues.

    Technically, I ‘only’ have an eating disorder. However, after years of childhood abuse, I have issues with depression, PTSD, DDNOS and various other labels.

    My GP fought very strongly to keep anyone from labelling me, because once you’re labelled, you’re shoehorned into boxes that nobody really fits. I only have an ED diagnosis because I needed it to get the funding.

    My advice (not sure why I’m giving advice to you, you’re amazing!) is to embrace your individual situation. Maura might not have a label, but you know which areas she struggles more with. Go to those groups, talk to those people, read those blogs, make those friends – nobody will care if she doesn’t have the official label, they’ll just be happy to listen and support. Many people come to our ED support group who do not have a classified ED, but know in their heart that the issue is there anyhow.

    I have been incredibly lucky in my life so far, I’ve had some amazing therapy done by amazing therapists. But, without fail, the therapists who have done the best work with me (and who I have loved the most because of this), are those who have cast any labels aside, who have ignored which boxes I tick on a sheet, and instead have focused and grown to love me as an individual, with all my individual needs. Not having a label really is a blessing in disguise for me. You get to pick and choose the parts that fit the best.

    It is hard when funding is involved and you need to jump hoops. However, I have faith that your daughter (all your kids, in fact) will be just fine – from the little I read of them on here, they’re strong willed with great personalities, and a killer mama that you’d be daft to mess with.

    I work with children, some with very significant delays, and I cannot recall a single label for a child that had issues but did not have obvious physical needs. For good professionals, the first question should always be “what can we do to help?” and not “which boxes does she tick?” I have no doubt that you will find your way through life, and she will grow and find her way through hers, being supported and loved by people who care about Maura, and not about the labels. Discard the label hunters, keep the people who take your daughter into their hearts and persevere for her individuality, because they’re the best around 🙂

    • specialneedsrealitytv October 18, 2013 at 8:08 pm #

      I understand exactly how you feel. For years, we looked for a diagnosis for my son. He was labelled with cerebral palsy but wasn’t a typical case. We had 3 different geneticists and zillions of tests. After the head of genetics research at our local children’s hospital couldn’t find anything specific, we decided that it wasn’t worth going through all the agonizing tests and waiting for results. Eventually, my son started to have some significant physical regression. ( he already is non-verbal, non-ambulatory and the new label, intellectually disabled) When he lost some chewing and swallowing, we decided we needed to get testing again. After a year of waiting for results from a specialized test for a rare cerebellar disorder, our neurologist decided on a muscle biopsy. We now know he has a muscular dystrophy. And you’re right, it does help to know something, to be part of a group that has a “Cure” in its name. I have even met families who have the same rare m.d. that he has. That was kind of wonderful. But it’s a 2 edged sword. We know he has something more serious than we imagined and that’s a scary thing. Ack, I didn’t mean to go on so long. Anyway, I understand what you’re saying and how it’s more in your face now that you’re in the land of the label. .

  2. Lori-Anne October 18, 2013 at 11:44 pm #

    We are just entering this whole process as my 5 yr old has been labeled GDD this year, but without a real diagnosis. So far the tests are all coming back negative, so we are on the waiting list to see Genetics at the Children’s Hospital. I feel conflicted: I’d like to have a “label” just so we can move on and find him the help that he needs and the support we can get, but with a label means that it’s real, and that’s hard too. So far, I still have this possible hope that one day he will catch up with his peers.

  3. TheTruthShallSetYouFree October 19, 2013 at 11:17 am #

    Hi Phoebe. I think you are handling Maura’s situation amazingly well. My 5 year old son has had severe eczema since he was 2 months old, so he’s got plenty of scars to show. “What does Lawu have” has been a question I’ve fielded every time he’s had to mix with other kids. It seems to me human beings are happy when they can put something in a box, and give it a name. But I feel exactly what you mean about how sometimes people do no ask out of the need to understand but more for their own ‘focus’. Luckily my son is one of those irrepressible kids, he’s living his best life despite the situation, and it seems to me Maura’s doing the same. Good luck and pass my regards to her.

    • aine moloney October 20, 2013 at 7:07 am #

      Hello, phoebe, Teresa mcgann forwarded this blog. Aine here, from Grosvenor School. It was very interesting for me to read your thoughts about your first visit to Grosvenor and your subsequent experiences of being a parent of a child in a special school.
      I am a teacher {for more years than I care to put in writing} in special schools in Ireland,- special in that the students have to have moderate learning difficulties to be enrolled. Special also, because every child is nurtured and accepted for their different abilities, and celebrated for the inspiring people that they are. Special staff work in Grosvenor school, I believe. They accept the challenges, and rejoice in all the kids achievements. They don’t get any special accolades. Like yourself they don’t get to have a label or a ribbon day.
      if the school community , its staff, parents and students, were to design a logo or a label for ourselves, what would it look like?
      I look forward to your response, if you have time to share one.
      Regards to our lovely ex-student Maura, and hope that her abilities are being recognised and celebrated in Grosevenor style in her new school.
      regards, Aine

  4. My Dance in the Rain October 23, 2013 at 1:03 pm #

    I am happy I know what genetic issues my daughter has, it helps give direction. But, I can only imagine how difficult it must be for you and your family. Despite the delay or disability we should all be supporting eachother as a community. I also have noticed alot of discrimination even between different syndromes or disorders. I don’t think this will help any of our children, we should be united all acrros the board because even though there are so many different types of disabilities we somehow all travel down a similar road. We should be helping eachother not pushing anyone away.

    • phoebz4 October 23, 2013 at 3:29 pm #

      I totally agree, having been on the receiving end of such behaviors. We all have much more in common than not.

  5. Nicole October 24, 2013 at 3:14 pm #

    Wow. This is a really interesting post, even for someone whose nieces both have special needs. Thanks for making me think.

  6. phxross October 25, 2013 at 12:34 pm #

    I recently saw a show on TLC about “World’sTallest Kids”. Most are a result of pituitary tumors. One boy is not, but because he couldn’t stop growing they did endless testing (in an effort to save his life). They found a certain gene had split and reconnected backwards. I thought about Maura, thinking that there needs to be a diagnosis widely accepted of “idiopathic developmental disorder” or something like that since they’re not likely to spend as much time/money on a non life threatening issue. Then schools, social services, and insurance needs to be required to accept “idiopathic developmental disorder” as THE diagnosis and make the person eligible for the same / similar services as those with autism spectrum disorders and downs syndrome, etc. As long as the medical community can say after complete testing “IDD” would accepted (though not the end of testing as new technologies become available).

    • phoebz4 October 25, 2013 at 1:51 pm #

      You are brilliant!

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