Sunday, April 25, 2010

“That’s retarded.”

You’ve probably heard this before as a comment that follows an account of something somebody did that was silly.

How about this one… “ He’s a retard.”

As a comment that follows a description of what a person did that was not up to par with someone’s standards or expectations.

With both above comments… there are two connotations for the word “retard/ed”… one, that it is something that is silly or funny, OR that it is an insult due to a result of one’s foolish actions.

Well my daughter is retarded… how’s that for a description for a human being? What feelings did it evoke in you? Did you think that I was being rude? Or did you think that I find my daughter comically strange?

NO… I did not, and will not ever, use this word to mean that it is an insult, nor as something that suggests something humorous.

Society has misconstrued the definition of the word “retarded” in so many different ways… from something that connotes peculiar amusement all the way to something that has an offensive undertone.

By definition of the BOOKS, the word retarded means “delayed”… add that to the word mental, then mental retardation in simple terms is “delayed cognitive functioning”. Now, by no means does this mean that when something is super funny then that something is intellectually impaired, or if one makes thoughtless comments or actions then that someone automatically has deficits in mental functioning… for if that were the case then haven’t we ALL at one time or another have done something irrational or imprudent? Haven’t we ALL at one time did something that is deemed uproarious? But are we ALL then going to own up to being described as “retarded”?

My daughter is retarded. At this point she already has significant delays in her development. Though it still is too really predict what the future holds for her, there is already a lot of uncertainties. The label mental retardation is a bitter pill to swallow for any parent with a child who has this condition. Yes folks it is a condition. Not an instance, not a comment, not an action, and most definitely NOT an adjective that can justifiably describe somebody. It is a condition, no more no less. But society, and people with impaired understanding of the depth of what this word really means, deems it otherwise. And this is a sad truth, and a very “retarded” grasp of what the word really means (and by retarded I mean backward).

What makes it harder to swallow is the negative connotation that society has given it.


My daughter has “Mental Retardation”…. Not in the sense of it being a comment or an insult, it is a fact. Is it a great label to have? NO. I don’t think any parent would want that label for their children. Nor would any other label that connotes that something is “not typical” for any child. Anything that connotes a “special need” is something that creates worry and anxiety in any parent, whether the special need be something that is a result of a medical condition or because of a condition that suggests developmental delays (in one or several or all developmental areas). I also do not expect to have everyone be able to understand what “mental retardation” really means, not with society seemingly resisting to have its definition evolve in a positive direction.

But this label, this “Mental Retardation” is a label that qualifies my daughter for services as early as infancy... services she needs.. services that I as a parent cannot provide by myself…. services that can help her move towards the developmental ladder at her own pace, in her own timing, so that she can develop her full potential… so that she may have a better quality of life.

And NO… I don’t think that anything she does is strange and peculiar. If she makes us laugh or smile it is not because she did something really funny, if for anything the smiles and laughter she brings into our home is out of pure and utter JOY of having her enrich our lives… Now how’s that for “retarded”?

Sunday, April 04, 2010

Life Goes On

I thought my life was over the moment that it became official that my daughter has special needs. There have been many nights wherein i was crying my eyes out greiving for the loss of my perfect child, grieving for the loss of the child that i want and wish for my daughter to be, and grieving for the loss of the life that i wish to have. Back then i felt that my life is over and suicide sounded like a very sweet option... if only i can find that courage in me to do it. But i can't and i felt immense fear and shame and i just wanted to sink in a hole and stay there forever. The only other option i felt i had was isolation.

But life as i know it cannot stop. Even if i bury myself in the darkest abyss, everything will keep on moving forward and if i do not go with the flow i will be left behind if not be forever stuck. I had to choose to unfocus on the "have nots". I have to stop resisting the urge to move on and rid myself from finding comfort in depression and anger.

I have a husband and another child that depend on me. I have my family, my friends, my career. I still have the "haves" for what can make my life something to be worthy of living. I have Isabella. She needs me.

I should not let fear of the uncertain stop me from moving on. And just when i started to teach myself to take things a day at a time, i discovered (or is it rediscovered?)the gifts that each present moment brings.

I learned to see the what lies behind the tape and NG tube on my daughter's face.... and let her beauty shine way past what the doctors call "dysmorphic features". And upon giving my daughter credit that she has a potential to develop, i saw the strides that she was able to make in such a short period of time. I appreciated each eye contact, each moment that she visually tracks, each cooing sound, each progress on head control, each effort to put her hands together, each grip on my finger, each incidental effort to put her hands in her mouth or to reach for things... each smile that was meant for me.

The smiles were the best part... it took her 3 1/2 months to flash us her social smile.... that smile that let me know for the first time that she recognizes mommy.

I love you baby Isay! There are a lot of "nevers" that i have read about regarding your syndrome, but we will show the world that you are not a mere statistic and you are capable of so much more than what literature dictates.

This spring break, the whole family went for a 3 day San Francisco getaway... i realized that my life has not stopped at all. It almost feels like it is barely beginning. And the discovereies of what lies ahead, 'im sure, will be an exciting adventure.