Thursday, April 30, 2009

Navigating the Gray Area

There's such a fine line between having special needs and being treated specially (read: differently). Well actually, I don't think the line's so very fine for the people who have the special needs. My son, along with many other kids with health issues, will tell you he wants no special treatment, whatsoever. None. He's not interested in being a "poster child" for his disease, he doesn't want to educate people, or even make much of a difference in the world right now. He's fifteen. He wants to hang out with his buddies, talk about girls, make stupid videos and annoy anyone over the age of 21. The last thing he wants is to be constantly reminded of his unfortunate roll of the genetic dice.

But the problem is, he does have needs that are special. Things that might occur outside of the house....when he's at school, or with friends. Things I must address with teachers, coaches, and administrators. And this is where I run into problems. If I make too big a deal of things, I am setting my son up for special treatment... Sideways glances, sympathy, perhaps even preferential treatment (all of which are unwanted!). But if I play things down, inevitably an issue arises that a teacher may not be prepared for, and my son gets in trouble and embarrassed in front of the whole class for something like being in the bathroom for too long. 

Some people get it. But those are usually the people who ask questions. The ones who step outside of their obvious comfort zone and really try to understand. The ones who don't, are the ones who are quick to nod "Yes," when asked if they understand fully, and declare, "No!" when asked if they have any questions. The ones that don't want to deal with it, and cross their fingers that nothing happens on their watch.

Kids can be heartless and unthinking. My son has had kids come up to him and matter-of-factly say, "You're gonna die". That kind of blatant idiocy doesn't bother my son. He knows that these are the same kids who would be calling him names or bullying him for other reasons, if they didn't have something so easy to use. 

But unfortunately, sometimes it's the most well meaning people who can unwittingly do the most damage. People who want to know how to handle the situation or want information, but are afraid or too uncomfortable to ask. The best advice I can give, simply as a mom, is to just inquire from the heart. Be honest about what you want to know, and be ready to hear what that person has to say, even if it might make you uncomfortable. Look them in the eye and really listen. Take them at their word and don't try to read anything deeper into what they tell you. That's what I do with my son, and sometimes he reveals how he's coping. Or, sometimes he says nothing at all. But it's his story to tell... How he wants. When he wants.

If you want to read other stories of people who have been affected by disability discrimination, go visit Diary of a Goldfish

38 comments:

Kristina P. said...

What a heartbreaking post, Deb.

Tabitha in Bliss said...

I so wish my mom could read this. She would say "tell them Deb!"

jori-o said...

Everything about parenting is such a fine line--a tight rope a million feet high!

Mary@Holy Mackerel said...

I go through the same thing every day with our son. It's such a fine line we tread, and you're never really sure when you're going to trip.

Debbie said...

I can only try to imagine that delicate balance you must be striving for. And why are kids so cruel and insensitive? I'm sorry your son has to deal with this.

Beth said...

Well said, my friend. Well said. As a former special education teacher, I worked hard to teach my middle school students their own best advocate as my mother had taught me to do about my hearing.

My students didn't mind open, honest questions. They just wanted respect. It really isn't so complicated.

Soxy Deb said...

"Be honest about what you want to know, and be ready to hear what that person has to say, even if it might make you uncomfortable. Look them in the eye and really listen. Take them at their word and don't try to read anything deeper into what they tell you."

Excellent advice in ANY situation Deb.

Jenn@ The Crazies said...

Thanks for a great post Deb. My daughter has ADHD and is nothing compared with what you live with BUT she does get alot of cruel comments made about being "cookoo" and "crazy" and needing meds in the middle of the day. Kids can be cruel! ((HUGS))

Lee of MWOB said...

Beautiful post my friend....I love your last paragraph especially....and that it's his story to tell....

I admire your attitude and approach to this hand you guys have been dealt....

You're a good soul....

mommy4life said...

Great advice for dealing with other people in anyh situation!

Under the Influence said...

It sounds like you are handling this beautifully!

Eva Robertson said...

Yeah, very good advice for us on the outside (so far). Thank you. And what a lucky boy your son is to have you as his mom.

jill jill bo bill said...

That boy has such a great mom. What you said is exactly the truth. No matter WHAT we have going on physically, emotionally, etc, we just want to be respected. I know you are so proud. I am too for you!

Mariah said...

Wow. Thank you for sharing this post. There is a lot of wisdom wrapped up in this vulnerable shell you just gave to us. Keep at it girl. We are all behind you and your family.

Michel said...

Well said! It is a difficult situation to navigate for some people and you have broken it down into the basics. Perfectly stated!

Quirkyloon said...

What a sweet post Deb!

Your son has a terrific Mom! I admire your wisdom in handling a difficult situation. *smile*

Thank you so much for sharing.

Sally's World said...

Deb, this is so moving, i hear you 100%. its like walking a tightrope, in a way i think its harder for those without obvious disabilities in so many ways...before Aaron lost the ability to walk, he was looked at like he was a child misbehaving, beign distructive, no one asked...just judged...

with deion it is different because of the chair, but then i spend my time telling people the wheelchair doens't make him stupid...its about education....

but with us to speak out, like so may mums and dads...it WILl get better, it has to!

big ((hug)) to you Deb...

rickismom said...

My problem is that my daughter has not yet learned to disregard those comments.....

Wendyburd1 said...

Deb did something happen? So sad.

CaJoh said...

I strive to be neutral with everybody I know. I do not want to label anybody because that causes me to treat them differently. Perhaps this is why many people don't point this out to me because they know I treat everybody with respect.

But I am sure that my ignorance may bite me back and I might do something that unknowingly hurts the other person.

Thank you for your insight in identifying those "Grey Areas" that we need to tread cautiously.

Annie said...

Thank you, Deb. So hard to know even how to ask those awkward questions, but I am working on it. I love candid open people, so am striving to be more so myself.

Rachael said...

what an eye-opening post. thank you for sharing this perspective + your words of wisdom as a parent. i love what you wrote, it is his story to tell.

narrator said...

I always want to tell both parents and teachers - please don't "Sarah Palin" your kid. Do not go out of your way to say, "look! something is very wrong with this kid!"

Listen, if we're that kid, we damn well know we are not "the same" http://is.gd/vOQY

So we don't want to be your "Super Crip" and we don't want your sympathy.

What we want in universal design, so everybody can choose methods and supports, and we can as well, so we need not ask, need not beg, need not declare our diagnosis, need not be "special" in all the worst ways.

Thanks for saying what you have - as well as you have.

Ira Socol

Never That Easy said...

Such a thoughtful post, and it really shows how much you care about your son, how hard you must work at really understanding him. I love that you get the fact that it's his story, and that really listening is key.

So glad to have gotten this glimpse into your lives, with BADD.

Heather of the EO said...

You're an amazing mom, Deb. This is so hard to navigate and the way you approach it and the advice you've given here is just plain GOOD. Thank you.

Sass said...

I want to come find you, hug you, and sit with you and talk for hours. K?

My son gets exhausted at baseball practice, but he won't give it up.

His chest scars show when he flips during gymnastics, but he likes the muscles it's given him in his arms.

He doesn't want to talk about it, he doesn't really want to fully understand it, but he doesn't want to hide it.

He just wants to...BE.

And so do I.

And so do you.

I so heart you, Deb...

seahorse said...

You describe the balancing act of your daily life very well. And yes, I agree, the well-meaning often hurt us the most.

Ginger said...

I can understand your son's point of view, he doesn't want to be singled out. Kids can be so cruel and that breaks my heart.

Brenda Jean said...

It might be PMS talking but I read this and wanted to A)slap someone
B) tell you that people are idiots most of the time. C)cry for him because it was hard enough being a teen for me. I can't imagine how he feels. Then finally I settle down and think how lucky he is to have you as a mom:)

Jenners said...

I feel for you ... I would want to rip those boys apart.

And thanks for your advice/input. If everyone just spoke from the heart and sincerity, the world would be a better and happier place.

Hugs.

J.J. in L.A. said...

I don't mind if/when people ask me about my disability. It's questions like, "What's wrong with you?" that causes a problem. I reply, "Nothing" which confuses them. Then I'll say, "Word your question differently and maybe I'll answer it." It's rude of me, but they were rude by asking in that way.

angie said...

This is so beautifully written, Deb. I love that your wrote to inquire from the heart.

Em said...

I love this post.

Straight to Your Hart said...

That is a trait that needs to be refined by many...even with adults!!

I've been in a situation like that with my daughter this week...knowing what to say that is or helping. Well, crying more like it from me...sigh.

Hugs:)

Tiaras & Tantrums said...

great post! I understand this completely . . . although my son does not have a genetic disease . . when my son was diagnosed with SI, speech apraxia, a feeding disorder and possible autism - all I could think of is what can I do to protect him from the people who will call him names or ostracize him (his own grandparents and cousins mind you).

I don't know how you can refrain from following him around all day long!!! too bad you can't be invisible - hugh?

Denise @ Sunflowers, Chocolate and Little Boys said...

I can not even begin to imagine how hard this situation is for you. I dont know that I could balance that fine line or not. With myself it is a little easier, I try to pretend I am ok....until I am home and then I fall apart. Sometimes physically. I have only had to deal with my illness for 3 years and have no clue how I would have coped if I was sick as a teen. Those years are so hard without any added burdens. Ugh....Im sorry, I really wanted to say something positive but those words just arent coming. So sorry :-(

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Megan said...

I agree! Sometimes people don't mean harm, but in the process, it happens. I wish more people were educated about disabilities.