Friday, January 7, 2011

It all depends on your definition of brilliant ...

bril·liant (brlynt)
adj.
1. Full of light; shining.
2. Relating to or being a hue that has a combination of high lightness and strong saturation.
3. Sharp and clear in tone.
4. Glorious; magnificent
5. Superb; wonderful
6. Marked by unusual and impressive intellectual acuteness

Over the course of the last almost 4 years, we have been asked on occasion,in one way or another but usually in this fashion:"Do we know how high functioning Zoey is or will be?"And recently, I was asked basically the same thing but this time it was in a far more classless and down right ignorant manner.One I am not going to repeat.But that inquiry is the motivation behind this post.For those wondering,why the rant.

Each and every time I have been posed this question, I am taken a back a bit.Because never,in my 24 years of raising children,have I ever been asked that about one of my typical children.Ever.Why is it then,that people take the liberty of asking it of Zoey?As if because she has Down syndrome,it somehow makes it okay.I have often wondered what reaction someone might receive,if they sauntered into the hospital room of parents that had just given birth to their seemingly "perfect" newborn and they uttered,"Hey,are you thinking the kid will head to say Harvard,,Georgetown,Yale or perhaps trade school or ITT Technical might be more up their ally?"Do you see how ridiculous that sounds?

I have decided that from now on,when I am asked that,I will say,"I don't know.What is the scale you are comparing her "functionality"to? What exactly is your definition of "high functioning?"Will be interesting to see what answer,if any, I receive after the wide eyed,mouth hanging equally wide open,look disappears from the taken aback persons,face.

Let's be honest here for a moment,shall we.In the case of my child,she has Down syndrome,had Infantile Spasms and had a major stroke.One look at her MRI and you would be surprised she does what does.Just ask my husband.He saw the MRI up close and personal and my glass always 1/2 full husband,wondered silently if she would ever do anything.Period.

There are some inherent realities to the above mentioned 3 things.I am not fooling myself.About any of them.But when I look at Zoey,I have never attempted to define her life by a measure of IQ.I have never measured her worth or her future, on her intellect or what she will or will not accomplish,based on or from an academic or cognitive standpoint.I have never measured any of my children and their worth,on those things.Instead,I look at Zoey and all I see is the the most radiant smile and a tiny body just bursting with love for those around her.Her kisses,hugs,waves and giggles tell me all I need to know.That is why I have tried, as of late, to not run through the gamut of Zoey and all her medical hurdles,if she is not with me.Because the Down syndrome,stroke,doesn't walk,doesn't talk, doesn't eat,illicits a preconceived notion of Zoey to others,without meeting her.They most likely picture her and define her by diagnosis' without meeting her in the flesh.And that is not fair to her.

There are very few things that I am 100% certain of but one thing,hands down,I can guarantee,is that if anyone were to spend a day,heck even an hour with Zoey,they would walk away,being very sure of something and it is this:This child of mine is brilliant.Absolutely,without a shadow of a doubt, brilliant.

I love my new kitchen.

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Look,I can even put stuff in the oven.

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That was yummy.Need to wipe my mouth with my napkin.

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Now to finish up by cleaning the dishes.

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Love and kisses to my best little friend Camille for my kitchen.I love it!

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My brilliant child in action.

38 comments:

SECRET PEPPER PERSON: said...

I hear you sistah. Keep on preaching it! Will we see Zoey on Top Chef soon?

Erin B said...

What an eye-opening post. I have 2 "typical" little girls and you're right...a parent should look as far ahead as possibly tomorrow. Enjoy today and measure your children by their spirit not their long-term capabilities. Thanks for sharing what must be a difficult situation.

blogzilly said...

Someone said something to you that set this particular blog, this set of feelings, in motion. This much I understand. I have a question for you however.

And you know me, so I am hoping you know that I ask because you have something I lack completely...wisdom of experience. I don't mean any disrespect and if I do come across that way...well, c'mon, it's me. Tell me the RIGHT way and I will learn, you know that.

Were you ever the person asking this question to yourself about Zoey, and if so, how did you overcome that in yourself? See, I find myself as that person in Bennett's life and it scares me. It embarrasses me. I read this and I say 'Oh shit...am I the only parent that ever asked this of my own son? About what his limits are?'

I don't want to be Bennett's obstacle. I want to be Bennett's Dad. Period. So my question is, and if you want to address it privately, write about it in a post as an entry, however, if you ever felt like that and if you did, how did you cope with those feelings?

Lacey said...

I was just telling someone else about this book about DS that Ray ran out and bought after Jax was born. Although it did have a lot of good medical info, instead of saying Down syndrome or trisomy 21, it said mentally challenged. I read two pages and was done. Why the stereotype? Zoey wraps her arms around me and burys her face in my neck, and I dont want to ever let go! The girl is brilliant (and she sucks you right in and wraps herself around youd heart) You know she has something special when she can make Ray cry at the drop of a hat!
By the way, I hope you had some nice words for this ignorant person!

Elizabeth said...

My husband owns a business here in LA, so when Zoey is ready for a job in his kitchen, she's got a spot.

I really appreciated this post -- and adore your comeback to the inane question. I'd like to say that people's intentions are good, but I'm tired of thoughtless intention. I'm also tired of having to explain that I look on my daughter in the exact same way I look on my sons --

Karol said...

Brilliant and Beautiful. Stunningly......Achingly.....Beautiful.
I always love the question "What are you going to do with them (both Moise and Laynee) when they are older." And I've been known to answer "what is your family going to do with you when you are older!!!!" Sure glad I didn't waste even a millisecond of our precious little time worrying about that.

Tina said...

That video was so beautiful, and that princess kiss wow, it made me tear up...Zoey is Zoey as each child is what he/she can possibly be. I don't expect brilliance from my son, I expect him to be himself, but I do expect and hope he is kind and loving and a good person. I expect Saira to be the best she can and not what the next child with DS is or what the next typical child is. Each of us adults are different just as each of our children are. I hate comparisons that so often crop up, infact I cringe from them. I want people to see what my beautiful daughter is and not where she stands on some developmental test scale. I don't deny that I do wonder sometimes whether Saira will be able to do certain things but that is just out of concern for her. We live in a society where there is too much competition and sometimes I feel it even amoung the DS parents. Today I see Saira as the child that makes me happy and makes me a better parent, I wish more parents would look at their children and think of what they are giving us rather than what they aren't.

I love that kitchen set, I know Saira would love it too, wish our girls could play together, Saira loves her baby too, loves feeding and making her drink water in exactly the same way. Hugs to your princess and a princess kiss to her too.

Becca said...

Zoey is a beautiful, brilliant shining star, who will undoubtedly make her mark on anyone she comes across, anywhere she goes. I picture her as a pixie, flying through the air and waving her little wand spreading pixie dust on people and making them smile and laugh and love life. I know that sounds weird, but I think you know what I mean. LOL She has overcome so much, and I am willing to bet she's not done surprising people.

Someone else posted on her blog this morning about a woman who said to her, when discussing self-awareness, that "people with Downs will not know better." What gives people this notion that they can say hurtful or stereotypical things to a *parent* of a *child?* Is it okay just because the child has an intellectual disability? Because the parent must somehow feel like they're less their flesh and blood and that they must love them less? They're placing a value assumption on others. How freaking frustrating. The question of "functionality" always makes me uncomfortable, too. I would love to have a witty response, but I do love your analogy of how it would be like asking someone if their kid's going to go to Harvard...maybe that'll be put to good use!

I hope to have the privilige of meeting Miss Zoey (and you!) in person one day.

stephanie said...

Well no need to convince me or my family on how brilliant Miss Z is.
I've set her up as Em's role model a long time ago.

It's here that I come when I need a push in the right direction or when I wonder, will Em ever get a particular sign. But it's here that I come when I just want to smile. Nothing more, just to see Miss Z and smile.

At her young age she is a teacher, a role model, a student, a friend, a sister, a daughter an aunt and a survivor.

Not yet four she has touched more lives than you most likely will ever know. She has battled some of the most hideous medical conditions on earth and came through ready to tackle the world.

Brilliant? That goes without saying. High Functioning?
How dare they..

Melissa M said...

Zoey is absolutely brilliant. Just as Claire is, and all or our enhanced buddies. I too hate the 'functioning' question, and have responded right from the start by saying we never know how high functioning ANY child will be.

Cammie Heflin said...

That question always irritates me too! I have given out a similar response as well. People usually shut up pretty quickly when you turn the tables!

Anonymous said...

That post struck me more than most. I guess maybe because you shared something that felt to me to be heartfelt and an observation of the human race that is indignant.

I have no children, so perhaps I have no place to have an opinion. But I usually do anyway.

Heather, I would look these idiots in the eye and merely ask, "What is your functionality?" Because clearly it is low to middling, as they say.

That posting just really ate at me. Some people.

And Ken, my response would be maybe Zoey's family has had thoughts along every which corner that others ask. But they are very personal. Probably heart wrenchingly difficult at times. I don't know because I will never stand in their shoes. But only idiots would ask such questions so "over the edge" personal.

People, in all their wisdom, should look at Zoey and say to Heather, "What a beautiful child you have."

What an incredible journey you take us on, Heather. And how you have educated some of us seemingly "idiots" along the way.
I am hoping hoping hoping someday it will be a book. Because not everyone is on the internet, and because it should be shared with many more.

CB

Bea Braun said...

BRILLIANT AND BEAUTIFUL!!! That princess kiss has some serious flair!

Anna said...

I get it..... I cant stop posting about our accomplishments in the past 7 months because I feel the need to prove it to others that she is SMART, she is more like a typical child than NOT! And if I can be so bold..... there are times I AM THE ONE that needs the reminder..... it shocks me sometimes. I had dreams and they were dashed, then to be given them back??? what joy. You and I both know, they are nothing short of Angels sent to us, there is so much we have to learn isnt there?! Zoey is a fighter.... she is so blessed to have a family cheering her on!

blogzilly said...

@CB
Were you saying that I'm an idiot for the question I asked or did I misunderstand what you were saying there? Cause you were calling the original question askers idiots to Heather when addressing her directly and then you shifted gears over to me and my question.

I didn't think I was being too personal at all, and besides, I've asked Heather a lot more personal questions that this both on and off the site. If she had found it offensive she could have moderated it out.

Anonymous said...

Well stated Heather - and shame on those that question this sweet, adorable child's capabilites. For everyone's information this 6th child is leading the ENTIRE Needham family!!

How about 15 minutes! forget 1 hour or 1 day. maybe even instantly - all you need is... Miss Z looking you straight in the eyes and flashing her beautiful smile. I know this, because I received that smile not 5 minutes after we met last Spring.

The video is great - and the kitchen set is outstanding. Maybe, maybe eating the "play" food will stir her on to try the "real thing" If not, so be it folks.

Sorry if I appear to be "ranting" on my soap box.

Love & hugs to everyone

Bluebelle

Anonymous said...

Becca - just read your posting- An awesome desciption of our Sweet Zoey - A pixie flying around waving her magic wand and spreading love to all - PERFECT!!

Loraine
(Bluebelle)

Jessica said...

I hear ya loud and clear and Amen to that! I love the definition of brilliant. Don;y you feel lucky and truly blessed in ways beyond imagination? Visit me at lovingsophia.blogspot.com

I am not good about posting consistently :( I love readng the blods of fellow DS mommies!

Jessica
mom to Sophia, DS (10), and Mira (12)

Anonymous said...

Zoey is beautiful and awesome:)

Kristin said...

Oh so cute!!!! And yes, brilliant. Love the princess kiss :0

The VW's said...

Zoey - definition: BRILLIANT!

Well, I guess we'd have to add beautiful, loving, cute, adorable, smart, fighter,.......etc.

Yep, Zoey is one wonderful, little lady! Love and Hugs!!!

Jeana said...

Love this post. Love your girl. Love your family.

Anonymous said...

Ken. By no means calling you an idiot. You are close to the family and know where the borders are, I'm certain. You all share a lot in your support of one another. You share a lot with all of us strangers in your blogs.

I'm saying there are a lot of people who ask inappropriate questions and seemingly cast judgment when they have no business going there. Strangers.

I would never call you an idiot. No knife at that gunfight. Sorry for the misunderstanding.

CB

Lacey said...

Ok, I hadn't watched the video before my first comment because I was on my phone. We are getting in a car and driving down right now! I need some Zoey loves! That princess kiss is the best, and how lovey is she with her baby! Love my Zoey!

Bethany said...

I hate, hate, hate the term of "functioning" when it comes to children with special needs. As a former special education preschool teacher, I was asked repeatedly about the functioning of my children. I would proudly answer that each one was absolutely amazing and unlike any other child I had ever known and that when it came to the things that really mattered I had the best class in the school without a doubt. Zoey is indeed brilliant in all of its definitions and the video of her is beautiful! She has come so far and is thriving, full of life and love and attitude and constantly learning.

Anonymous said...

A lot of "typical" kids don't grow up to be functional adults. I know - I just had my high school reunion.

The presumption that *anyone* can predetermine what their kid might eventually achieve is preposterous. I think an appropriate response to these questions is: I don't know - I let my membership to the Psychic Friends Network lapse.

Mo

b said...

I am in love with Zoey's hair! AH!

I used to be "put off" by that question when my son, Sean, was tiny. people would ask me if there were "levels" of functionality. Blew me away. I think now I just say something like "Each of my kids have strengths and weaknesses, just like we all do!"

I have a friend who told me early on that in her faith, people with intellectual disabilities are considered more fully evolved than the rest of us; they have done all the learning they needed to do in previous lives, and in this lifetime they are here primarily to teach. I look at my boy everyday and am astounded at all he teaches me, and the people around me...especially the ones who have little to no expectations. Like you said, just an hour with one of our kids would change opinions every time.

blogzilly said...

Thanks for clarifying CB...I did not really THINK that was what you were implying, but I just wanted to be sure.

But...who ARE you...I have been wracking my brain trying to figure out the initials CB and I have a couple of working theories. But I know you know me cause you called me Ken, not Blogzilly and you just referred to bringing a knife to a gunfight, something I JUST referenced in one of my most recent blogs. You don't even have to say in public. Just e-mail me at klilly @ creatusmaximus.com.

I'm like the dude who just robbed the bank and got the speech from Dirty Harry on the streets of San Francisco at the end of the barrel of a .44 Magnum.

'P-pleease...I gots-ta know...'

Runningmama said...

Yep, I hate that question too and Emily is only 19 months old! What does it mean anyway??? I worry just as much about what my typical son will grow up to be just as much as I do Emily because our typical kids are just as likely to end up as what these people would term "low functioning"...I know plenty of well-intentioned parents with a grown adult typical child still living at home without a job or any goals in life!

ANewKindOfPerfect said...

It amazes me the things that people feel are okay to ask other people! I would never DREAM of asking someone the things we have been asked about Emily. Your Zoey is beautiful, and brilliant, and amazing. To overcome what she has overcome, and still be so fantastic? That's not an easy task!!

I loved watching this video. Her baby sure had a big meal. :)

Laura Gilmour said...

I try to take each child I work with as an invidual and view them as smart in their own right, even if their abilities are not high compared to other children. I see Zoey has learned a lot in the last year from watching this video. She's engaging in pretend play rather than throwing toys. Her coordination doesn't always cooperate for what she wants to play, but she is doing her best. Children with special needs often perform lower than their actual abilities on IQ tests because they are in a strange environment, listening to a stranger that is unimportant to them etc. Therefore, I am skeptical of results on IQ tests for children with disabilities, especially those with language delays (e.g. they may be able to do a task on their own but not understand the instructions that they are supposed to do this task now). I believe school programming should be determined by what a child demonstrates they are able to do on a day to day basis with their familiar caregivers. It would be a much more accurate measure. I think Zoey is capable of learning a lot, even though it probably won't be average, it is still a lot.

Penny Green said...

I guess these inquirers would be able to define 'normal' then, cos seems to me that's the basis on which to make this predicted expectation of any child's development and as far as I'm aware even milestone developmental guidelines are just that 'GUIDELINES' and have time spans.

And as to defining 'normal', are you normal? I'm damn sure I'm not and I don't even know what the definition is. Our difference and diversity is what makes the human race so amazing - tell these stupid people to stop worrying about what Zoey can or can't do and how well she's 'functioning'.

There are far more important things to enjoy about Zoey and they are missing them!

Scrappy quilter said...

Brilliant and beautiful are two words that fit Zoey girl. I love seeing her play with her kitchen.

I must tell you about M and what he says now. If you ask him what Santa says, he looks at you and says "Ho Ho". I thought you'd get a kick out of that. Hugs

BRANDI said...

Yes, Zoey is totally brilliant! Love her radiant smile!

Thought you might want to check out Kelle's Down Syndome fundraiser for her daughter's first birthday celebration! She has already raised an unbelievable amount for Down Syndrome!!! How awesome is that!
www.kellehampton.com

Anonymous said...

Okay so, this may sound a bit naive but how could anyone NOT see how HIGH FUNCTIONING Zoey is right now That is some amazing girl you have there... don't let the catastrophizers get you down.

kim said...

Zoey is so cute!!!!

Googsmom said...

I've never met Zoey but I LOVE her!! I love you too Heather {{{{{HUGS}}}}}
PS It's good to know we have a chef in the family. I'm not a very good cook so when she opens her new diner, i'll be there for dinner.

My name is Sarah said...

I love your new kitchen Zoey. Have fun cooking.