what do you see?

Veronica

Oh sweetie (((hugs))).

Bettina

hugs babe……… and much chocolate.

I’d never really thought about it. But I know what I don’t see. I don’t see whole children and broken children. Obviously disabled children are not ‘broken’. And the idea that “normal” looking children are “whole” is a stupid one. I see children who think and/or function differently. Different isn’t any less “whole”.

And I don’t see parents who need to be pitied or sympathised with or shunned for daring to venture out with their “not normal” children. I see strength and courage and most often a damn sight more dignity than the stupid morons who gape at them in horror or laugh (may the fleas from a thousand camels infest their loins and arm pits)

cathy

i’ve started writing this comment a few times and i keep deleting… i don’t really know what i see.

you sound like you have had an exhausting week.i guess what i “see” is a strong woman who loves her children to death. i “see” a woman who tries to be superwoman but is really just human. a woman who needs a rest and a cry sometimes. and all of that is okay.

it doesn’t matter what anyone else thinks - your children are loved and that is the greatest gift you can give them.

hope next week is a better one

Robin

I see a kindred spirit, and wish I had a way to open a conversation and say “yes, I do understand”.

We’re knee-deep in biannual evaluations over here, and the other one picked yesterday to pull a stunt that got him in more trouble than he’s ever been in in his life. Yes, I do understand.

He’s not a shell. He’s Boo.

((hug))

sorrow

What do i see?
sigh
probably nothing. I never notice the obvious, or so I am being constantly told. I have ignored stares my entire life. When i see a kid, i see a kid. If he is screaming , i look to see if it’s hurt or pissed off.I don’t really much care what the rest think or see. I only get in their faces when they get in mine.
In your case i would probably look over and think” Cute kid, where did she get those shoes?”

sweetsalty kate

Alright, so here I am, clicked over from your comment on my post. And with all the respect in the world I’d like to add the context that’s missing.

It’s not fair to characterize me as a rude, insensitive, oblivious shithead-passerby.

I am not.

I am a mother who gave birth to twins three months early, one of them gravely injured with bilateral fourth-degree brain bleeds because of a rare complication. Liam had no healthy brain tissue – it was as though a bomb went off in his head. He would have been immbobile, unresponsive, unable to walk, talk, eat.

Had he lived, I would have driven myself into the ground for him. He would have been fed through a tube for the rest of his life. I would have drained the secretions in his throat several times a day for him, because he would have not been able to swallow.

I loved him so much. In his six weeks he had brain surgery and heart surgery and then he died, and I am gutted.

Before you call me stupid—and very honourably come to the comfort of magnetoboldtoo—you need this context.

I was awestruck at the two brothers I saw on the ferry, at the love and the caring. The affected brother had nowhere near the severe disability Liam would have had, but the two of them side-by-side knocked me off my feet. It left me thinking how proud I would have been, to see Ben sheparding Liam through the world with such grace. I would sell my soul for it.

My perception of those brothers has nothing whatsoever to do with any other children of any other parent. It is rooted in my grief at having lost my son twice – first when he was born, and again when he died.

And hell, yes. It takes all the fucking self-control in the world NOT to drown myself in a bottle or two of smirnoff.

Just so you know.

http://www.sweetsalty.com/ingliseast/2008/02/what-may-have-b.html

Mr. Fabulous

I am sorry you have had such a hard time lately. I know it can’t be easy, and my heart goes out to you, my friend.

lceel

The best and most extraordinary people I know are the parents of kids with special needs. Count yourself among them.

Candy

Well, it looks like all the other commenters are people in similar situations to you, so I’m going to be really brave and not change the name to Anonymous, and answer your question.

I think it is very hard for people who don’t live with disabilities or have children with them, to see past them. It is hard not to react viscerally, to feel it like a kick in the stomach.

It all depends on the visual aspect of it. Some things are harder to take than others. I think when I was a child, or even a very young adult, I probably felt only disgust when I saw someone with a disability.

Now that I’m a mother and maybe just the wee-est bit wiser, I think about the people behind the disabilities, and I feel regret and sympathy. Maybe pity sometimes, although that will probably enrage you. I wouldn’t want to be pitied, so I’m sure you don’t either.

I’m still not sure that answers the question “What Do You See?” Maybe it’s more like, what do I feel. Admittedly, I feel relief that it isn’t me. And then, a sense of awe that there are people strong enough to go through that with dignity and love.

I’m going to go and disable comments and emails on my site now, so I don’t get hate mail. Best to you.

Babychaos

Man. That’s shit. I’m so sorry, have a virtual cup of hot chocolate, hug, more chocolate to dunk and some fancy shoes oh yeh and a nice massage from your PA, remember, the guy with the towel ;-)?

Sometimes, even though you’re his Mum, wanting to be away from Boo is just natural. Not because he has special needs but because you are human and so is he. You’re going to grate on each other from time to time. It’s ok. Let it go.

As for what do I see. Well… This is a really hard question to answer but here goes.

First up, I see the love. I always see the love. I also have nothing but admiration because what is normal for you looks dead hard to me. Because even if I see the love, I may not always see the reward. I would always smile at a kid like Boo, possibly at you, too but definitely at him first… Although I might worry, afterwards, that I had freaked him out!

So if I met you and Boo, I might be a little awkward because I would want to be sensitive to the way he is so I didn’t tread on any social landmines but at the same time, not make an issue out of it so we could just hang out and turn the difference into background noise. I would be aware I could unwittingly hurt both of you by my own ignorance or by asking for social guidance from you in a crap way. This is not frivolous to me. I’m a bit dispractic (can’t spell it) and when I was a kid I had what I believe is now called ADHD. It didn’t exist then, though, so I just went to nursery, playgroup, preschool with all the other kids and caused chaos!

I had no idea that the things I did and said were disruptive or unusual or that I walked round and round the room and screamed solidly all day. All I knew was that I liked most people but they didn’t like me very much. That hurt because I was lonely and I wanted to be liked. Strangely, apart from my family, there are three or four people from around that time who really stick in my memory because they bothered to learn how to communicate with me. So. When I see you and Boo, I would want to be one of them.

I know I haven’t put this very well, so I hope it makes sense…

Take care you.

Cheers

BC

Anja

Oh Babe.

I’m not going to be telling you anything you do not know. You can love someone and still want them to get the fuck out of your face. You can love someone and for a brief moment wish they weren’t in your life. You’re not Wonder Woman, although, you would look dead sexy in her boots.
Boo is hard work; Boo is a daily, hourly, minute by minute challenge - that’s Boo. That’s the cards he and you were dealt. And there’s got to be tears. No tears, you fall to a bag of shit. That’s life.

What do people see? Hard one, girl.

You can’t hang a person for not understanding.

You can’t hang a person for being scared of what they don’t understand.

There will be the fly scrotums that will ‘tut tut’ and feel ’sorry’ for your girls being landed with that ‘broken’ child.

There will be the fucktards who will think “If only she (meaning you) knew before he was born and she could have ‘dealt’ with that”

There will be the people who will discreetly avert their gaze because they do not know what to say or do. They will think “is it rude to look?” People put on their peril sensitive sunglasses - what you can’t see, isn’t there.

The majority will fall into this category.

And there will be some who will feel the love those kids share. Not many, but some.

Babe, you’re not having a pity party. You’re releasing some steam from the pressure cooker you live in.

I await with greedy anticipation your next potty mouth installment. *hugs*

Talia

I am not entirely sure what I saw before (I guess I’ve never really thought about it), but I do know that you writing this blog helps everyone who reads it realise that we shouldn’t look at anyone differently, or rudely, or stare.

So thank-you Kelley for enlighting us every other day as to what it’s like in your shoes. God knows most of us would be worse off sometimes without it.

Lightening

((((HUGS))))

I don’t know whether I would call it pity but I do really feel for parents with kids who have a disability or perhaps don’t fit into what we’d call the “normal curve” of society because I do know how draining it can be. But also how exhilarating. I remember walking down the street with an Autistic girl between me and my DH (who was then my boyfriend) and feeling like it was the most amazing and natural thing in the world for the 2 of us to be caring for this girl together.

I had an interesting experience on Monday. It’s 10 years since I’ve worked in the workforce and on Monday I saw the “little” boy who I used to be a support worker for. He was with his current support worker and I felt jealousy. That’s MY “little” (not so little at all now - he’s all grown up) boy and I should be with him, not her.

In all honesty, I have plenty of days when I sigh with relief when my kids head off to school. Parenting is a hard job and all kinds of different things make it tough.

And in all honesty I do feel for the siblings of children like Boo because it is HARD on them at times. But it’s also HARD on kids like mine to grow up with a depressed mother. And my counsellor keeps telling me that hard times can actually be GOOD for kids because it teaches them about life.

I’m finding this hard to write because I don’t know how to express what I feel and fear that what I say will upset and hurt you.

No one can walk in another person’s shoes. No one can fully understand what another has to struggle with. I think we need to move through life trying to make less assumptions on what people are thinking because we don’t REALLY know. We’re only guessing at what they’re thinking.

Widdle Shamrock

((Hugs))

I will tell you what I see, based on what I see here in my house.

I see a gift. I see a unique boy, who, if people around him see beyond the meltdowns, could learn many beautiful things.

I see a boy who is not disabled because of who HE is, but is disabled because of how some people in society views him. They are the ones who are disabled, not him.

I see siblings who will give great compassion and understanding to others. They will learn that no two people are the same and differences are to be celebrated. They will know that it is no bed of roses and when they see another mother with a ‘different’ child, they will smile at her with warmth and compassion because they know the heartbreak you have lived with.

I see a mother who knows how love can hurt.

I see a mother who reaches the bottom of her reserve and when she doesn’t think she can go on, pulls deep within herself to find more strength.

Your family knows passion, the extreme highs and lows that having someone unique like Boo in it brings.

Your family knows life.

Your family knows love.

Gemisht

I don’t know really what I see, I guess I haven’t thought about it like that before.

But I know that I look at you with admiration. Because I wouldn’t be strong enough to live it every day. And most days you are, but you are also human so you can admit that you aren’t having a great time occassionally. But that doesn’t mean that you love Boo any less, or that you are having a pity party.

Your girls sound wonderful too. Everyone should have someone to look out for them and love them they same as they do for Boo.

HUGS to you and cyber chocolate coming your way. Sorry its been a tough week. Hope next week is way better.

Jayne

Let me guess - Boo’s cracked it coz his bed was changed?
Yep we get the screaming,Tourette’s noises, minor hand flapping,throwing things,etc when we change things/routines.
Every school day was a migraine-in-waiting with FB exploding at home from holding it in all day (and teachers claiming “he was an angel at school so perhaps the problem is at home” made my teeth grinding so much better, NOT!)
You’re allowed to feel miserable, don’t apologise for it.
Just make sure you blow up balloons for your next pity party to stab the damn things pop them - works better than bubble wrap

Kelly

I’m not sure what I see. I know when I see a parent struggling to cope with a child’s meltdown, I sympathise. My 6 yr old gives me enough grief. Yet, beyond the empathy, I doubt I understand what it’s really like. I think when I “see” kids, I just see that: kids and their beauty. If it’s behaviour of some kind that draws my attention, I guess that’s the empathy - and if it looks really tough on mum or dad, I’m probably thinking “but for the grace of god, there I go”.
From the little glimpses I get into your world, you sound like you have a tough, but very beautiful family. It seems to me you have given your daughters an amazing amount of strength in enabling them to deal with life with their brother. It seems too that you are doing wonderous things for Boo. And it seems you get the stuffing knocked out of you occasionally / often.

Stimey

Like everyone else, I’m sending you hugs. I have those days too, when I need to send my child to someone else for a while. I really think we all need a break sometimes. We need that village that we don’t always have naturally and so we have to create it with friends and schools and aides.

I think when people see my sons together, they see three crazy kids. Jack’s disability is not visible at first glance. If you don’t know him or watch him carefully, I think you would see his issues as more behavioral. I think perhaps people see him as ill-behaved at times. And sometimes I feel defensive about it.

But I think the most important thing is what I see when I look at my sons. I see three boys who adore each other. I see three boys who don’t know that any of them is different from the others. I also see love.

You don’t always have to be strong. It’s too hard to always be strong. We’ll help hold you up.

(Jeez. Sorry to sound so fucking cheesy.)

river

What do I see? How about I tell you what I do.
Every day I see disabled people come through my checkout and I smile, say hello, how are you today? some of them are physically different, some are mentally different, some in wheelchairs being pushed by family or carers. Once when I said hello to a boy about 12 he hung his head shyly and smiled so hugely, his carer thanked me and said I’d made his day because most people ignored him and spoke only to her. I’ve sometimes passed a group of people out in their wheelchairs and thought how lovely to see them out enjoying the sun and soft breeze. when I hear a screaming or crying child in the supermarket I don’t think of a tantrum, I think there’s a child who is overwhelmed by emotion and/or (new) experience. While I can’t understand ALL that you go through, I can say that my older sister is retarded (they call it mentally challenged these days?) she is 58, but mentally anywhere between 10 and 15 depending on current situation. My hubby is different, not retarded, but suffering many other mental health issues.

Amy

I’m not sure that I do see.

If I saw two young people out and one was obviously caring for the other I would see love.

I have had so many people in the last few weeks comment on the sharing,caring nature of W for looking after P. Only cause P is smaller and more in need of his looking after. I think I would see what they have seen. A child/teen genuinly caring for a sibling. The same as what I would see if I saw a child/teen looking after their baby sibling. Make sense??

In regards tantrums, oddness etc, I must admit I do tend to be grateful for not being me. I admire and respect the carer. I feel sorry for the child/teen with differences. I tend to pray that they are so far out of it that my rude stares (not deliberatly) are missed by them.

That they are able to live life their way happily. And not be affacted by the people who like me have no idea of the impacts.

I hope your week this week improves. I hope you realise that you are opening peoles eyes to their narrowmindedness with your blog.

I hope the mailman brings you shoes, chocolate and some wine soon. You know like a misdelivery or some thing.

frogpondsrock

Normally I read your comments. but tonight I am ignoring them because I dont want to ’subconsciously’ use other peoples words…

Some disabled Adults frighten me. I am not sure how to behave. should I smile or not..? should i ignore them? I tend to smile and then keep on walking..

Luckily I returned to study in 2005 and in one of my classes there were a few inclusion kids.. who gave me a whole new perspective on disability or on ability…

Kai, a special olympian gold medallist was very concerned with My disabilty ( dodgy knee)and could only sympathise that I was so restricted in my life.. hehehehehe

I think that young Kais solicitous concern for my obvious disabilty made me realise that it is only ignorance that separates us as people..

kim..

Shoegirl

It’s hard. It’s hard to resist the urge to beat people to a pulp when they stare and shake their heads, or snicker, or roll their eyes, or make comments under their breath.

I will never know for sure what other people see, when they see me and Miss C. But I would like them to see a little girl who has come along way and a tired, but loving mom, who has done everything she can humanly do to make things better.

I’d like them to see a mom who needs a break and needs people to lighten up.

I’d like them to see how special my daughter is, even if her accomplishments seem mundane to the rest of the hemisphere.

I’d like them to see and actually give a crap.

But, sincerely, I’m trying to stop seeing and I’m starting to talk, voice and cut people off when they act as ignorant as they do.

((hugs))

magneto bold too!

River: thanks. I wish I could come through your checkout!!

Cerebral Mum: “I just wish I never saw in their faces the effects of all those who don’t see.” Good point! Hmmm, now I think about it the whole ‘more bees with honey than vinegar’ applies here. I tend to walk around with my nose in the air with the whole ‘I don’t give a fuck what you think’ attitude when I am with Boo and he is in a mood. Perhaps I should just smile. Might give it a go

Amy: Dang, I thought you were sending me shoes! LMAO Looking at the source of a noise, an odd reaction, someone without a limb is human. It is natural. You notice the different. Nothing wrong with that. It seems that my concern was unfounded.

Gemisht: hugs sweetie.

Frogpondsrock: Oh I understand the whole being startled and frightened. Shit Boo scares the shit outta me sometimes with his unpredictability. And he is only going to get bigger. And I don’t know how to react to some adults either. Kai sounds adorable

Jenty: Yeah, they are. They astound me sometimes. I tell them that they don’t have to go somewhere with Boo - cause being teens it is all about the image - and they don’t give a shit what others think. Pretty freaking special kids I got there. Even if they are lazy little biatches

Shoegirl: Oooh I like you already with a name like that! Hugs babe. ‘The great unwashed’ as my dad likes to call them suck. But hopefully, and by the look of the comments here, they are the minority. Unfortunately the more vocal minority.

Riayn: Thanks babe. Yeah, I feel guilty for not liking him every single minute. Gotta get over that eh?

GoaldeeBug

Honestly, as a parent with mostly healthy children (two born with sight problems, but that has been corrected with surgery), I didn’t understand.

My first reaction to a frazzled mother trying to cope with a child with challenges used to be ‘Thank God it’s not me’. If we are all honest with ourselves I think we can all admit to this one at some stage in our lives. That was then. Now I have more understanding, since having children of my own and friends with autistic children

Cheers and hugs

tiff

Ok.

I just wanted to say, and it won’t be as eloquent as before my son deleted the first post,

I am with you on this. I feel for you. I do know how this is for you because we have Mal.

Mal is my foster son (and my nephew). I haven’t talked about him much because I can’t. For various reasons. Because of Privacy and DoCS and because I find it hard to get a handle on things with Mal somedays.

Mal is globally delayed with autistic tendencies.

Mal has bad days.

The kids have bad days accepting that Mal is theirs.

I have bad days knowing what to say to them when they come to me telling me they are embarrassed and AJ (his brother) tells me he hates him because he is stupid.

I can understand how they feel.

I hate the stares and the sniggers.

But I also see how Mal has changed things for us. We accept everyone just as they are.

The kids are different because of Mal. They are all fiercely protective of him. They love unconditionally.
They have redefined what ‘perfect’ is.

Mal is an amazing being. His smile lights up the world. He has changed our perspective and we are better for it.

I do know this;

Who are we to say who is perfect?
Who are we to look and point and judge?

Your Boo is amazing and he will change the world. Just like his Mum, just like his sisters, just like everyone else who has ever loved a person with disabilities.

Perhaps we are the shells, we, who cannot verbalise our feelings and frustrations, we who bottle our spirits up, so that other’s don’t think us weird, so that others don’t stare and point at us. Maybe we are disabled and the Boo’s and the Mal’s of this world are perfect.

I don’t even know if this makes sense anymore. I am passionate about people passing judgement on others and it hurts that you are hurting.

tiff

Kelley,
Of course you could and I know you would if it was asked of you.

Want Mal??? LOL Kidding, kidding.

Angel

I haven’t been able to read what others have said and will go look when I’m able.

Hugs to you my lovely.
I am happy I sent you that email last week as I now understand your reaction.
<3

…..

I have mixed reactions depending on where I am and how things are with us.

Because I am living it to a certain extent I feel for the Mum of the tantruming or flapping or screaming child…. I am also happy it is not me today…. If I look that way, I worry that she might think I am judging her when I in fact SO get what she’s feeling.

I am a little awkward around disabled adults but try to be friendly.

These days it is hard to know what to do around children with severe autism. I have a knowledge. I know about sensory issues. I don’t want to make it worse. I think it was easier when I didn’t know.

When I see a sibling with a disabled brother or sister I see their love for their sibling. I see the care. I smile.

I think of my kids.
I think of the future.
I am thankful - I am lucky.
It puts me in my place or sends me to the pits of woe-is-mes - depending on my day.
I hope and pray Miss B-B will love and watch out for her brothers.
I hope and pray things keep going up - but know that the next dip will come.

xxx
A