Tuesday, October 22, 2013

Why Your Language Matters

Let's say you and I are out to lunch and a very thin woman walks by.  I make a disgusted face and say to you, "Ugh, she is just CANCEROUS."  I think you would be a little taken aback at my harshness.  Let's say a young man walks by the table and trips on something on the floor and I yell, "Nice walking, Palsy!"  You'd probably be looking for a place to hide.  But let's say you are telling a funny story about something really stupid you did on a date and I go, "OMG, you are such a RETARD!"  Most people would probably just laugh harder.  This is what people who are diagnosed with mental retardation (and their families) face on a daily basis in our society.  While it would be considered very insensitive to make fun of someone with cancer or ALS or MS, it is considered perfectly acceptable to use the medical diagnosis of mental retardation as a synonym for doing something stupid.

The word "Retard" (and permutations such as "Fucktard" and "Libtard") are prevalent in our society.  There are Facebook groups called "Retarded Mom", "Americans Against Libtards" and "Fucktards Unite".  When special needs advocates have petitioned Facebook to remove those groups as hate speech, the response from the Facebook Quality Control Department is, "Your complaint has been reviewed and no violation has been found."  As in: IT'S PERFECTLY ACCEPTABLE to compare someone with political viewpoints that differ from your own with someone who has a medical condition resulting in a lowered IQ and developmental delays.  GO RIGHT AHEAD!  Nothing wrong with posting pictures of people with average intelligence doing stupid things with the heading "Retards."  I have seen everyone from nurses to lawyers to special education teachers using these words.

I have actually seen people use the argument that people with mental retardation don't know enough to be insulted, so who are they hurting?  This point of view is so ignorant, I don't even know where to start.  Clearly, there are millions of people who are classified as mentally retarded (or "intellectually delayed", as is the preferred term these days.  These are people whose IQ falls below 70) who are perfectly capable of carrying on normal conversations, caring for themselves and holding jobs.  These people, such as actress Lauren Potter of Glee, who was born with Down Syndrome, will tell you flat out that using these words HURTS THEIR FEELINGS.  See for yourself:

Shouldn't that be enough??  If it's not, I will tell you that for those of us whose family members are, in fact, blessedly ignorant of the unkindness in the world, it is heartbreaking to have our innocent loved ones constantly degraded and dehumanized by having their medical diagnosis turned into fodder for taunts and jeers.  When you freely use language that makes a group of people seem less than human, then that is the way society as a whole learns to treat them.  It is why I had an aide to a congressman on Capitol Hill ask me how I can justify all of the public resources put into caring for people with special needs when they will never grow up to be tax payers.  "A society is judged by how it treats its most vulnerable" - Gandhi.  And I, for one, will be judging YOU by the same measure.

Here is the bottom line: If you use the "N" word, you cannot expect black people to want to have anything to do with you.  If you use the "F" word, you cannot expect gay people to want to have anything to do with you.  And if you use the "R" word, in any of its iterations, do not expect my child or myself to want to have anything to do with you.  You have been put on notice.

"That which is said, cannot be unsaid" - Danish Proverb

My reasons for always minding my language

Monday, October 7, 2013

Why I'm a Pinterest Mom

I get it.  I get all the Pinterest jokes.  I totally agree it is causing many of us already-stressed-out moms to feel like we are in constant competition to throw the perfect birthday party, make the perfect school snack and take the perfect family photo.

Hey look, I'm not saying I showered, and keeping MY kid alive is NO JOKE!

And yet, I will totally own the fact that I am a Pinterest mom.  I'm that lady.  I threw my daughter, Elyse, a superhero 6th birthday party and made everything by hand:

I create whimsical Halloween costumes:

I make occasion-appropriate snacks:

I do not do this to bolster my flagging ego or to one-up my fellow moms.  I do this because, as a special needs mom, there are a lot of "mom" things I am NOT.  I am not a "let's-join-the-travelling-soccer-team-and-spend-hours-every-week-on-the-road" mom.  I am not a "do-every-activity-you-want-as-long-as-you-get-your-schoolwork-done" mom.  I am not a "playdate-every-weekend" mom.  I am not a "spontaneous-family-trip" mom (hell, I'm not even a "well-planned-out-vacation" mom).  I am not a "spectator-at-every-event" mom.  I am not even, depending on Anabelle's health, a "tuck-you-into-bed-every-night" mom.  I have forgotten to send my kid to school in a jersey on sports day, I have missed sign-ups for things, I have said no to classes Elyse wants to take because I cannot possibly get her there every week, I have skipped bath time several days in a row from sheer lack of hours in the day.

When my second daughter was born profoundly disabled by the rare neurological disorder lissencephaly, one of my first and biggest concerns was how this was going to impact the life of my typical, then almost-3-year-old.  How was I going to give her everything I wanted to give?  How was I going to provide the kind of childhood I wanted her to experience?  Had I, in the attempt to provide her with a life-long companion, instead given her a life-long burden??  

The thing many people don't realize about being a special needs parent is that, for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache.  These are the kids who can see what is going on.  Who will feel the taunts of schoolmates over having a special needs sibling.  Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things.  Not to mention, who miss out on having their parent be involved in their life.  We are the family with only one parent in the stands at sporting events, one parent in the audience at the dance recital.  And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this.  Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible.  Or, as in Anabelle's case, she is so susceptible to getting ill that it just isn't safe for her to be in a crowd (she has, numerous times, ended up hospitalized over what to the rest of us is a mere cold), and her parents are the only ones trained to care for her needs.  There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without.  Anabelle has never wanted for a thing in her short life.  It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants.  My typical child breaks my heart much more frequently than my special needs child.  It is for Elyse that I have to get really creative in the ways I go about creating memories, as the needs of my second child are restrictive to the freedom of movement that most parents of young children are used to in their lifestyle.   
When Anabelle was 6 months old, a friend a sent me an "invitation" to join Pinterest.  It was like opening the golden gates to never-ending possibilities for the trapped-at-home mom I so often was now!  Because while I have always considered myself passably crafty, what I am NOT is wildly creative.  And here it was: the ultimate guide to the perfect childhood!  (Okay, I admit that is overstating it a little bit, but I was a desperate, terrified, newly-inducted special needs mom with a bored, over-active toddler on my hands).  Endless ideas with step-by-step instructions.  I CAN DO THIS!!

It can be really hard not having the time to be the mom I would like to be.  My typical child does have to pay the price for having a special needs sibling.  But the one thing I DO do?  I spend a lot of time at home. Anabelle's fragile health has her living in a virtual bubble a lot of the time.  I cannot run Elyse around doing fun activities and having experiences outside the home.  What I CAN do is try to create fun and memories INSIDE the home. Elyse helps me with most of my Pinterest-inspired activities, it allows us to bond and express our creative energy.  It allows me to contribute something meaningful to her childhood beyond hospitals and therapists and "hold the suction wand for a minute".

Elyse-designed headbands

So please, don't take it as a challenge when Elyse and I make her teacher's end-of-the-year gift:

I'm just using what I have so my daughter has one thing about which she can say, "Hey, MY mom does that!"

Tuesday, October 1, 2013


Another beautiful Microcrphaly Awareness Day come and gone...

My two favorite stories of the day:

1. An old friend of mine does not feel comfortable allowing her gorgeous twin daughters to appear on social media.  She made an exception to let them show their support in yellow for micro day.  I was so touched (and btw, that is the only photo you will not see republished here, as I respect her concerns and will not spread it further than my Facebook wall in a public format)

2. My parents recent sold their home of 26 years and purchased a downsize.  They settled on the new house less than a week ago, and have not even moved in yet, as they are having some renovations done first.  Yet, in meeting with the new neighbors, Anabelle and Micro Day came up in conversation.  The new neighbors got in touch with Buttons and Bows (exclusive provider of the "Ana-bow":  https://www.facebook.com/buttonsandbows181) and ordered up enough for the whole neighborhood.  Spread awareness, made a donation to Anabelle's Wish (www.anabelleswish.org) and welcomed the new neighbors in one gesture.  Thank you.

Thank you to everyone who rocked the yellow yesterday!  These are all of the photos in which I was tagged: