13 Nov

We are one of the “one in six”.

“About one in six children in the U.S. have one or more developmental disabilities or other developmental delays.” says the CDC’s website.  They list things like autism, Asperger’s, and Cerebral Palsy as some of the several “main” developmental disabilities.

I guess we fall into the “intellectual disability” side of things.

How does the Center for Disease Control start of the paragraph on “intellectual disability”?

Intellectual disability, also known as mental retardation, is a term used when there are limits to a person’s ability to learn at an expected level and function in daily life.

(I’d like to point out the words “mental retardation” to those who keep telling me it’s never used any more in a medical sense.  It is.  Obviously.)

The fact sheet then suggests you contact the National Dissemination Center for Children with Disabilities – which sounds fabulous until you go to the website and read this –

 NOTICE: The National Dissemination Center for Children with Disabilities (NICHCY) is no longer in operation. Our funding from the U.S. Department of Education’s Office of Special Education Programs (OSEP) ended on September 30, 2013. Our website and all its free resources will remain available until September 30, 2014.

So yeah, the place you can go with your intellectually disabled child has been defunded and shut down.


I found this while looking up just how many kids are diagnosed with developmental disabilities.  Which is one in six.  Now, if you try to look up how many children go undiagnosed?  That’s trickier.  There aren’t any real numbers.  There is this from SWAN UK (Syndromes Without A Name) –

How common is not to have a diagnosis?

Even though most people do not realise it, having an undiagnosed genetic condition is actually quite common.  It is thought that about half (50%) of children with learning disabilites[1] and in approximately 60% of children with multiple congenital problems. do not have a definitive diagnosis to explain the cause of their difficulties. As many as 50% of children who are in contact with NHS Regional Genetics Services may not get a diagnosis.

The US branch of SWAN says 30-40%.

So out of those 1 in 6 who get diagnosed with developmental delays…2-3 of them will never have a specific diagnosis.

And yet, it is quite the lonely world.

I often find it a bit ridiculous, how children like mine can fall through cracks because they don’t have the right label.  I’ve watched parents know that there is something wrong with their child, can narrow it down to “intellectual disability” or physical issue, but then fall short at getting that precious Qualifying Diagnosis.  I’ve listened to many a friend have a meltdown because once again, their child was denied, or cry because for once, they actually qualified for something.

Life with a child with special needs is crazy-making, and I don’t say that flippantly.  The stress and anxiety has sent me to therapy, and I wonder how many special needs parents suffer from some form of PTSD.  Though if you’re still living it, is it “post-traumatic”?  Maybe it’s just a stress disorder.

Now, imagine living in that bowl of stress and then be told your child doesn’t qualify – you make “too much”, their condition isn’t “specific”, you don’t have the right “label”.

Imagine going to a children’s hospital and finding out that 30% of the patients are refused treatment on a daily basis because they don’t have the right name.

That, my friend, is life without a diagnosis.

There’s a reason or two behind this post.  Today, I sat in on the conference call that my husband’s company had with the insurance company.  It was a call for parents with special needs children, to try to figure out the benefits program.  Someone asked about treatment that was once covered for her child with autism, and would that be covered?  Oh yes, you still get covered for autism.  I asked about those of us without a diagnosis but who could benefit from autism therapies, can we partake, or must we have an autism diagnosis?

At first, the person curtly said “Oh yes, it’s for all disabilities.”  And I thought “Huh, strange.”  So I asked for clarification.  Turns out the person misinterpreted my question and thought I was talking about generic medical treatments – and the answer became no, to partake of the autism therapy, you must have a diagnosis of autism.

That’s what I thought.

My husband’s company used to pay for autism therapies, which in this world is unheard of.  But because Maura doesn’t have autism (got the screening and got to pay $250 out of pocket for it!), when she was accepted into an Applied Verbal Behavior course (AVB is a type of ABA therapy, which was covered by the insurance if you had a diagnosis of autism) – they had to bill it as speech therapy, not ABA therapy, so that insurance would cover a portion of it.  We paid out of pocket for the rest.  I won’t tell you how much this 3 month. 5 days a week, intensive therapy course was – but it cost more than our first few crappy cars.  Insurance covered most of it, but we still were out of pocket…well, who needs to go to Disneyworld?

To us, it was priceless.  Maura needed to be shown she could talk, and the therapy did just that.  They tweaked the program to focus more on her apraxia than her non-existent non-cooperative behaviors, and she did so well that the woman in charge of the program video taped her sessions to show how it worked.  She was the poster child of success in the program.  Sure, it was her and four children who had autism.  But we found something that worked, and we weren’t going to let something like a lack of label stop us from trying it.

That’s the thing with undiagnosed kids – you don’t know what’s going to work.  You have to try everything.  So telling their parent “Oh, your child can’t be part of this program because they don’t have X” is so very frustrating, it requires curse words to describe.

So after a morning of listening to all my medical insurance won’t cover before we hit the deductible, and how they’re cutting their contribution into the Health Savings Account, yay fun! – I went on Facebook this evening and found a few posts from parents of children with autism – their main consensus was “Autism Speaks doesn’t speak for me!”

I was curious.

It seems the co-founder of Autism Speaks wrote a “compelling letter” which had all the drama of a Very Special Episode.  She spoke of the trials and tribulations of raising a child with autism, and how something Must. Be. Done!  Think of the children!

This upset many of my Facebook feed because of these reasons –

they don’t see their life as “not living”

they object to the overtly negative tone to the article

they point out that they don’t address the fact that there are adults with autism out there too.

There’s some sort of Summit going on in D.C., where they’re going to “demand a national response” to the “autism crisis”.  She speaks of children being lost and forgotten by the system, by the country, and how we should think of the children, stand by the children, help the children.  Help them by making sure they get medical and educational needs met.

Helping children is wonderful.

But she isn’t speaking of my child.  She’s not speaking of that 30-40% of children without a diagnosis.  No, she only wants this call to action to benefit those children with autism.

I get it.  She co-founded an organization for autism.  Their focus is autism. I’m perfectly clear on the priorities of Autism Speaks – helping autism and finding a cure for it.  I get why she is up in arms about the plight of families touched by autism.

But the fact that she goes on and on about three million children who aren’t being helped, how we need to be helping them, and how those children are so very important.  Those three million shouldn’t be ignored.  But what about the others who are also being ignored?  Who also need medical and educational help?

Ms. Wright writes the words “Yet, we seem to have forgotten our children…”  I think the use of the term “our children” is a telling one.  She speaks of those with autism. Does she care about any of the others?  It would be really helpful if she did.  I doubt her scope of vision is that broad.

I speak for my child – because no one else could be bothered.  And I speak for those who have children like mine, because someone has to.

We are part of the 30-40%.

We are “one in six”.

But days like this? Families like mine?

We’re just one.



6 Responses to “One”

  1. panikikubik November 13, 2013 at 1:30 am #

    A great post and very an very important blog. I think you’re all heroes; you, your husband and your loved children. All the best to you.

  2. Helen November 13, 2013 at 7:16 am #

    Thank you for sharing your experiences. I work in a school and frequently see some of the very issues that you have addressed in your blog. You have certainly raised my awareness of what families cope with, particularly without a specific diagnosis. I certainly wish that a person could receive therapy based on needs, not labels. Keep up the good work!

  3. lisakadane November 13, 2013 at 8:35 am #

    Great and important post. My son is “one in six.” We are fortunate to have a diagnosis (genetic condition), so I can’t imagine how hard it would be to not know, and the ripple effect in terms of services for not knowing. Thanks for sharing.

  4. Joy M Newcom November 13, 2013 at 1:24 pm #

    Thank you for voicing the issues you face factually and anecdotally. The information has to become real for anyone outside the immediate scope of impact to understand why they should care. You do it well. Thank you.

    I deeply admire your tenacity. I remember that fresh-for-the-fight brand of motherhood. Hang onto it as long as possible. Do as much as you can for Maura NOW. As a mom of a now 22-year-old with intellectual and physical disabilities, I can tell you that the fights with insurance and government programs shift in nuanced ways. Crossing that 18-year (legal adulthood) mark well depends on the relationships you develop and the footing you fight for in these years.

    You are correct to realize that your brand of PTSD is more like chronic stress. And if it were just stress about your own welfare, it would be easier. Understanding that this type of stress will live as long as your child is the kicker. Well, that, and, for me, realizing that no one cares as deeply about my son as me and my husband. Keep fighting the isolating feelings when they arise. The day we get too tired or too frustrated to speak up is the day we go back to a society that feels proud enough of what it already does “for those kids.”

  5. painspeaks November 13, 2013 at 4:37 pm #

    Reblogged this on The Daily Advocate By Painspeaks.

  6. emcclure2010 November 15, 2013 at 11:11 pm #

    Yes. My brother does have autism but seriously…I get so frustrated with all the autism organizations. You are right, ALL kids (and adults!) with disabilities deserve attention and services. I mean, seriously, who cares what the diagnosis is as long as we’re getting assistance. And the autism organizations kind of make my skin crawl with all their “fix it/cure it” jargon. I’ll stop before I start foaming at the mouth. But our country as a whole is super crappy at giving services to people with disabilities…we’ve got a long way to go. And I think we need to have some major changes starting with all of us families throwing some major fits.

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