Tuesday, May 22, 2007

From the outside...

Today BubTar's school room mother asked how old KayTar was while helping BubTar from his booster seat.

She said, "Oooh, baby girl is getting big! How old is she now?"

"She is two." I replied, while smiling.

"It's time to get rid of that bottle, Mama." She stated, as she closed the car door.

And I pulled away from the curb feeling very much like I had been slapped across the face. Hot, wet tears poured down my cheeks and I didn't know why. I was angry and shaking, and the tears kept coming.

I haven't cried about KayTar in many, many months. Things are good, wonderful even. There is no cause for tears. So why now?

Perhaps it was because a stranger felt I needed a lesson in how to care for my child. Maybe because her words insinuated I do not know what is best for my child when I bust my ass on a daily basis to insure I do everything I can for her. That somehow she could tell from the two minutes our car door was open what was best for my child, a child she knows nothing about. Perhaps it is because I know that we have many more of these moments ahead of us, and that one day judgments like this will no longer be directed at me, but at KayTar. I don't know why I cried.

I know this mother does not know what we are going through; her words were not meant to be hurtful...slightly judgmental, perhaps, but not hurtful. As I pulled away from the curb, I thought, "Explain! You should have explained." but I couldn't have, not in the 10 seconds it took for that door to close. That is all people will see at times, a snapshot of us in time unaware of our past or future, only that moment.

People will see sweet KayTar wearing her harness and think I am awful or lazy and treat my daughter like an animal. They won't realize that she is deaf in one ear and delayed, and that she doesn't feel secure walking in public without it. They won't realize that she can't hear me call her name in a noisy place, or understand when I tell her to stop so she doesn't get hurt. They won't realize that it is the only way I can safely give her freedom to explore on her own. They will just see me in all my awful, lazy parenting glory mistreating my child with a leash.

They will see her with her bottle, like today, and wonder why the hell I haven't weaned my poor child already. Don't I know that it is bad for her teeth and gums? That I am holding her back by letting her continue to use it? They won't know that we are so very thankful for the bottle, and without it KayTar would likely have a feeding tube, because the majority of her nutrition comes through that bottle. They won't know she physically cannot suck from a straw or figure out how to use a sippy cup. They will see me spoiling my child and ruining her teeth.

Children one day will not want to play with her because she has a hearing aid and it makes her different, the way BubTar told me he didn't like a classmate because he wore glasses. I cried when BubTar told me that, because my heart broke for that sweet little guy and for his mother. BubTar was told in no uncertain terms that it was not okay to exclude people for being a little different than he is. But it happens. It shouldn't happen, but it does, every day.

I don't think about KayTar's future often, because so much is unknown...we don't know what to expect because life with KayTar is a mixed bag. She is extrememly bright, but also very challenged. She is an amazing study in contrasts. So I don't worry about the future, we will deal with it when we get there...but when a tiny piece of the future meets us here in the present, I can't help but notice it.

And maybe it cracks my heart just a little.

27 comments:

Oh, The Joys said...

((((you))))

You are a good mother and person. You are going above and beyond for her.

Try as best as you can to ignore people that don't know you or your situation.

(((YOU)))

Kristin said...

Grrrr. I'm sorry, Kyla, that she can't see what an AMAZING mommy you are. I would've felt so hurt by a comment like that too.

KayTar (and BubTar) is so lucky to have you for a mom.

nomotherearth said...

It was not her place to say anything! Things like that make me mad.

For the record, the Boy turned two in January and he still uses a bottle at night before bed. Frankly, I see nothing wrong with it. We'll switch when we're ready and not a moment before.

Angie said...

Kyla, I'm a lurker on your site. Can't even remember where I found you . . . maybe linked from Moreena? I read every day. You have such a way with words. My third daughter is 4 years old and has Prader Willi Syndrome, a deletion in her 15th chromosome. Your post today struck a chord in me. You put something into words which I feel often. My daughter is like Kaytar, it's not immediately obvious that she is delayed. I have similar experiences as you had today with strangers and even with close friends and family members - people second guessing the choices we make and accusing us of not requiring Christina to "act her age." I hurt for you, for Kaytar, for Christina, for me, for all the kids and adults out there who are judged by strangers and friends alike without consideration for where they are coming from and who they are. May we, by experiencing the hurt firsthand, become more sensitive to those around us and less judgemental. Thanks for sharing your heart. I've had the same surprisingly painful moments and I understand.

Becca said...

Oh, Kyla, I am so sorry! You are doing great and she is so lucky to have such a dedicated and understanding Mama.

Tammi said...

We moved to Australia when my 5th chikd was 3 months old. When she was 15 months old, we returned to the US for my father-in-laws funeral. The flight from Australia to Pa was 21 hours (PLUS additional time for airport layovers.) Baby girl had a pretty severe milk -and other foods- allergy and was, at that time, still drinking soy formula for the bulk of her allergy free nutrition. At home she generally used a cup but for the long flight, oh, how easy it was to put the powder in a bottle and have clean, spill-proof method of getting food into my little one.
Upon arriving at our final destination, after hours and hours of travel, under stressful circumstances, my mother, who hadn't seen her blessed grandbaby for many, many months said the one thing only a loving gramndma can say...."Is that kid STILL on a bottle?????"
Isn't it funny how just one comment delivered by someone who has no business in your life can cut you with just a few words.
Chin up, Kaytar is lucky to have you!!!

Ben & Bennie said...

I'm so angry for you, sister. I know EXACTLY how you feel. Just keep in mind that what me and you are doing through our blogs we will teach (at least some folks) there are times to keep their big fat mouths shut.

Trust me. Kyla will always find the love she NEEDS versus the kind of acceptance we both want her to have. My Jessie makes sure of that with Ben and BubTar will do the same for his sister.

BTW, I would honestly tell that parent your honest thoughts about her comment and how it made you feel. Do it as kindly as possible. You will be doing her a favor.

cinnamon gurl said...

You are such a good mother.

And people like that should be shot. I have received many backhanded 'helpful' comments like that, and I don't think any mother should have to explain anything. We make our choices and we are the best equipped to weigh the options and decide.

I still don't really get why people feel the need to 'contribute' in that way. But I think it says more about the commenter than it does about the mother they're commenting to.

I had a bottle until I was four or something.

natalie said...

Want me to slash her tires? That's my response to every insensitive remark. You are so right...she doesn't know you. She doesn't know KayTar. She spoke without thinking. I agree that you should address her, nicely, of course...after I slash her tires.

Christine said...

I know we don't "know" each other, but i just want to slap that woman! From what i have been reading here at this site I can tell you are a WONDERFUL mother. Those kinds of comments are about power and being a know it all. But they are so, so hard to ignore. They sting.

Oh, and I have a "leash" for my son, too. I have gotten many a dirty look, but again, they have no idea about me or my son or how he is a runner. A down right runner in public places. We do what is best for our kids, and often others just don't get it.

Hang in there.

~aj~ said...

I'm sure that woman didn't mean to be hurtful, but what she said was rude and inappropriate. I would have been hurt as well.

You already know this, but you and Josh are doing an AMAZING job with KayTar. Try not to let her comment get you down.

Thinking about the future can be scary. However, KayTar has the sweetest personality. I know she will have many friends and people will fall in love with her left and right.

((HUGS))

Anonymous said...

Im sorry she said that to you. On another board I post on one of the moms had a great idea. The alzeheimers association does this and she decided to use the idea for her disabled child.

Once she felt comfortable enough to do so, she made up a card with her child's disability info and when ever someone would make a comment that was rude or that needed to be explained in detail they didn't feel they could go into, they would give the card to the person and tell them to check it out.

Here was the post of one person:

"We have a 5 YO with extreme special needs. A good friend with special needs children made up cards with information on our children's issues to hand out. The ones she made for me says:

Front: If you are puzzled by my son's behavior.

It is not boldness, mental retardation, child abuse, not lack of discipline!

Back: Our son has a psychophysiological condition which causes him to become overwhelmed and respond inappropriately in many social situations.

We are committed to teaching him how to function in the community and would appreciate your patience and understanding.

If we have a problem in somewhere we can't leave we can pass out the cards. She hands hers out on airplanes and in waiting rooms and said the stares instantly change shape! I haven't used mine yet but it is comforting to have them in my purse."

I think its a great idea and could save some heartache in the long run if you become overwhelmed by the jerk ass comments, or if you just want an easier way to explain it all, though I know with Kaytar its not all that simple ;)

Jessica (Owensmama BBC/Invision)

slouching mom said...

She was not a little judgmental, friend; she was a LOT judgmental. And, frankly, rude.

You are a great mom, and only you know what is best for your daughter. Period.

bubandpie said...

I'm feeling a strong urge right now to crawl through the computers so I can SLAP that woman.

MotherBumper said...

Oh that makes me mad when I hear situations like this. I'm so very sorry that this happened to you, Kyla. You are such a great mom and I'm constantly inspired by the things you do for your wonderful kids. ((hugs))

NotSoSage said...

Oh, Kyla. You are so incredibly strong. And you're going to have to be. As will KayTar. But I believe that both of you have it in you.

I know that my brother still faces a lot of misunderstandings on a daily basis - people think he's drunk or stoned because he doesn't "look" like he's got anything wrong with him. It hurts him, and it frustrates him, but he knows that he is a bright and wonderful person and he has people around him that remind him of that. I know you two will help each other through.

Clover-Elf said...

My favorite tactic is to just say flatly "Excuse me?" Gives you time to think as they repeat themselves, and then you can unleash your TONGUE.

...not that I always have the guts to do this myself, of course, but I'm tired of kicking myself later for not saying anything. You do what you think you should, of course--and damn the dissenters who think they know it all.

I know I would have been heartbroken by that comment too, but look at how far KayTar's come in so little time. You're doing great with her, and that's what matters.

Em said...

Oh I hate that kind of judgemental "drive by" comment. Willow used a bottle until she was over 3 years (because she wouldn't eat or use a cup). Poppet still has one at 19 months and I don't plan on getting rid of it (she gets so much comfort out of it). I've had pediatricians tell me (both in the US and Australia) that it is developmentally appropriate for children to suck/use a bottle until they are at least three. One even told me to let Willow use it until she was 5 (she gave it up easily at 3). In terms of dental decay and language development etc. there is no advantage of using a sippy cup over a bottle.

Similarly, I remember once in NYC a man saw willow sucking her fingers and he said "that's a nasty habit, you've got to stop that" and I felt so angry because it was her way of comforting herself and it didn't cause anyone any harm... and when she was around four years old she stopped sucking her fingers - when she was ready etc. But boy that comment has stayed with me - and the burning anger that came with it.

jen said...

oh baby. you are an awesome mom. i am continuously in awe of you.

i always try to remember that when people are snarky its usually about them and their own narrow world view. yours is much broader.

you are a wonderful mom. bottles mean nothing, friend.

Beck said...

People just suck, what with their talking and all. Don't let Ms. Judgemental worry you for one second.

ewe are here said...

People can be so insensitive and just plain stupid at times. Sigh.

For the record, my 2 year old still gets a bottle of milk in the morning and at night because he insists it comes in a bottle, and I often use the harness/reins in crowded places or on a busy street when he wants to walk. And I think I'm a pretty darn good mom.


Hang in there... you're doing an amazing job!

Mommy off the Record said...

Just now reading this post.

God, just reading it got me pissed off. I hate it when people make comments like that. It is SO rude.

Don't even fret one more second about her nasty comment. You are a GREAT mom and she is ignorant. It's as simple as that.

((hugs))

Karianna said...

As you know, deficits in one area have no bearing on strengths in others. (Well, except in the affirmative, like a person being more attuned to one sense because another is impaired.)

"Yeah my kid has a bottle, but she can also READ!" :P

KayTar is an amazing, amazing girl. And I don't meant it in that soft-voiced condescension that is usually the case for people who remark about others with visible "difficulties."

The more I learn and see who KayTar is, the more I see her as an exceptional girl, not a "delayed" one. I recently saw the curriculum for a school for "twice exceptional" kids - their words - in which there were kids with various challenges who were also incredibly advanced in other areas.

The whole concept of a "snapshot" is one with which I struggle frequently. What is a "good" day for some may appear to be a "bad" day for others, and so forth. That little sliver of life doesn't show the big picture. But you know that picture. And you know that both your kids are fantastic!

Karianna said...

P.S. I actually wanted to play with one little girl BECAUSE she had a hearing aid. I thought it was really cool, because I thought people with unique abilities / challenges were intriguing! :)

epi said...

I know I'm late on this, but let me just say that you sound like an absolutely amazing mother - you know how to adjust what you're doing based on your child's needs, not some arbitrary criteria that work for "most" kids (and I question that most...). Keep up the good work - you and your kids and your husband sound amazing : )

DDM said...

HOW did you not run that woman over with your car? I know how it feels when people drop bombs on you like that, and it SUCKS. Her particular brand of bitchy was extremely passive-aggressive in my opinion.
I haven't yet learned how to not let things like that get to me. It takes a lot of self talk and reminding yourself that you know what's best for your child. If it continues to bother you, I think it would be perfectly appropriate to say something to her. Maybe just having you point out that a very flip comment she made and probably forgot, had caused a few bruises would be enough to keep her from doing it again or to someone else.
I'm so sorry Kyla. You know I think you are an amazing mom, and person. You've got more poise in your pinky finger than that other mom will ever have in her whole body.
I try not to worry about the future for Bugga too much. It makes my heart hurt to think back to how the kids in special education were treated when I was in high school. Instead, we take it one day (and one playground trip) at a time and figure it out as we go.
Also, I wanted you to know how great it was that you explained to BubTar about the kiddo with the glasses. THAT'S what I've been talkin' about!
(((Hugs))) You are WONDERFUL Kyla.

Don Mills Diva said...

Thank you for pointing me to this post. It was beautiful and heartbreaking.

HUGS