Retarded and Special basically mean the same thing now

I've been reading a lot about the 'Spread the Word to End The Word' campaign with a more intimate interest than I could have previously imagined.  One of the few mommy bloggers I like to read, Ellen over at Love That Max, posted this video "Retarded" which got me thinking.  Not just about vowing to obliterate this word from my vocabulary once and for all, but also about some of the other terms that are and will be used to describe my most glorious Moose.

As a person with Fragile X Syndrome, Moose is basically guaranteed some level of intellectual deficit.  'Intellectual Deficit' is what mental retardation is now called.  So sanitized, how nice.  Now, the tricky thing about putting  a clean new name on some terrible thing you say to young parents and countless other soon-to-be heartbroken idealists is that you can't erase the original word.  'Mentally Retarded' was the term used medically for quite some time, long before it was twisted and perverted into everyday colloquial speech to universally deem something as negative, ensuring that a new term had to be coined.

Not that the new term amounts to much anyway.  As soon as you hear 'intellectual deficit' your brain just translates it to 'mentally retarded' because that's what typical brains do, they organize and categorize new information by clustering it with established information.  It's like learning a foreign language as an adult, to some extent your brain will translate dialogue back to your native tongue for processing until you have so thoroughly imbibed the new words that they carry meaning on their own.  In point of fact, 'mental' and 'intellectual' capacity are the same thing, and for a thing to be held back, slowed, or retarded is the crux of what makes said thing at a deficit. Nevertheless, being mentally retarded carries a hefty connotation that having an intellectual deficit does not.

The inability to cleanse the original term  is especially true for Fragile X families.  The protein that Moose's brain is missing?  Well, that's the Fragile X Mental Retardation Protein, or FMRP.  The name of the gene that get's turned off and results in this lack of FMRP in Moose's brain?  That's the Fragile X Mental Retardation 1 locus of the X chromosome, you know, the FMR1 region.  Weird thing is, in 'typical' brains (not 'normal', that's not the proper term anymore) like mine and yours, there is plenty of FMRP generated by a well functioning FMR1 gene; our little developing bodies were chock full of Fragile X Mental Retardation Protein when we were Moose's age.

Don't imagine that the sarcasm dripping off the prior paragraphs is an indication that I'm comfortable with the idea of people calling anyone or anything, especially my child, retarded.  I find that inevitable prospect viscerally repugnant.  Having Moose in my life has made me far more conscious of the use of terms like 'retarded' and 'gay' and 'bitch' which are all pretty commonly accepted words in our culture and communities, even though when pressed we can all recognize that they're not especially polite nor for use in proper company.

So, what then of words like 'special'?  Holding aside that clearly I (and truly all who have met him) deem Moose exceedingly special in the most earnest and loving of senses, why does hearing someone say that Moose has special needs ping in my ear like an out of tune piano key?  Despite the fact that I'm in a position to refer to him this way myself several times a week, the words taste unpalatable.

I think this is due to a sort of linguistic bait and switch we attempt when using the word 'special' in this context.  Courtesy of Merriam-Webster, the meaning of the word is as follows:

If this definition be true, it is clear that to be deemed special is a great achievement, something to aspire to.  But who among us would wish to have special needs?  Herein lies the rub.  Few people call gifted children 'special needs', even though that's what they are in both the literal and practical sense.  In our culture, being special needs has a specific meaning, and not a positive one.

Regardless of what you call it, I am not pleased that Moose has Fragile X Syndrome.  In my mind, this is in no way contrary to the fact that I love and accept Moose for exactly who he is an who he can and will be in a way more powerful and permanent than I could ever put to words.  So, for all my discourse on terminology, the bottom line is that I want people to look beyond the words, look beyond the shorthand, look beyond the simple, and see the incredible, irrepressible, and complex little Moose that is my son... who just happens to have Fragile X Syndrome. 

Don't call my baby retarded.  And don't perpetuate the use of terms like this in any context.  Doing so makes it ok for someone else to use words that take away my real Moose and replace him with some sad, broken little creature in need of pity and rebuke.

I'm No Superwoman, I'm Just One Mama

We have been on this wild ride of parenthood for over ten months now.  The Guapos are amazing boys, both happy and charming, and good sleepers to boot, bless them.  With six months under our belts now, we've also started to settle into the Fragile X Syndrome diagnosis, the Fragile X 'lifestyle,' as well.

I have tackled Moose's Fragile X the way I approach virtually all scary things (and let's be honest, most of everything else as well)... I get all fierce and intense and just try to devour the thing until every element has been inspected, intellectualized, and dispositioned.  I am a walking catalog of the latest research in the journals, all of the therapy and medical terminologies, his developmental milestones in excruciating detail, the prevalence and efficacy of potential therapies, the biological and organic basis of Fragile X, and so on.  I have personally met with the leading doctor in the Fragile X field, the magnanimous Dr. Randi Hagerman, as well as the foremost therapists, Mouse and Tracy from Developmental FX, not to mention the countless other national resources I've corresponded with.  I attend every one of Moose's four therapy sessions each week, and keep the whole therapy team coordinated.  I am constantly gathering and assimilating any and all information available about Moose and his condition and anything that could help him be more successful.  I am hypervigilant.  

In my spare time, I make homemade Halloween costumes and birthday party decorations, help my sister launch her new business, maintain an active social calendar, spend time trying to hug on and support my incredible husband who is the backbone of our family, make casseroles for friends and family with new babies  and sick parents, handle all the finances, buy/wrap/deliver all the gifts, do the bulk of the cleaning and... I. Could. Go. On.  Oh, and I also work full time.

When people ask me how I do it (to me they seem to be impressed, but that can only be because they are not actually seeing what a barely contained catastrophe I am from moment to moment), I give one of my two basic answers: either (A) I have no choice but to do the best that I can with what I have at hand, or (B) I don't really sleep much anymore.

Neither of these statements could be more true.  In talking to other twin moms and to other special needs parents (I know only two other moms who fit into both categories), the 'what other choice do people think I have' sentiment is a pretty pervasive one.  I get that before you have kids, the concept of them can be boggling, but what I find surprising is the number of moms who I hear this from.  I mean, what do they do with their children, just phone it in all the time?  Isn't doing the best you can sort of the main thrust of parenthood?  I recognize the 'what you have' caveat can be a real game-changer.  Moose and I would clearly be in a very different place without the support network and resources we have available to us.  And I'm the first to beat myself up for taking the easy way out and not doing water play every night because sometimes it's just too much and I am only capable of so much.  Nevertheless, it's pretty remarkable what you can accomplish when it's important enough to you, and when it comes to the Guapos, the very best I'm capable of is the only choice the vast majority of the time.

Which leads me to answer (B).  Before the diagnosis I really did have it together pretty well.  The Guapos were on a good sleep schedule, we'd hit our rhythm with the care and feeding elements, they were happy and healthy and devoutly adored.  The childcare arrangements weren't perfect, but things worked.  Life was good.  There was balance.  I even took a grad school class because I had free time after the boys went to bed each night.  Then the diagnosis came, for a disability with no cure and unknown ramifications.  The possibilities for permutations became endless.  That is when the real sleeping stopped.  Time of quality with my Guapos became even more paramount.  Time not spent as such is now invested in optimizing our play time and daily routines.  Even trivial things like showers  are carved from sleep time (in my experience, only a parent of small children can appreciate the full thrust of this statement).

So, in the end, there is no magic.  There's nothing super special or extraordinary about me.  There's just me, One Fragile X Mama doing the best I can with what I've got, which does not commonly include a good night's sleep.