Not much longer -

tasty toes

S Smarties

Once upon a time I wondered how in the world Ivey would ever merge herself into this world and how we would survive in the normal world. You know the normal conversation world. Now I realize that she is doing just fine, the boys are just fine, it's me who can't get a grip some days.  Some days it is hard for me to converse in both worlds.

The end of this school year is wrapping up. Bittersweet.  It ended too quick. The boys have only a few more days and it is exciting winding down. Pool parties, field days and plays. Ivey has had some of those same things, but it is different- yet no less exciting. It's just different. Always different, and never a clue as how to prepare for what might be different and how that might rattle me. I try to think up all the scenarios that might occur that will be different in Ivey's life, different from the boys, different from the things that I see my friends experience with their daughters - and I mentally gear myself to go to those places, have the conversations, see the distinct differences between Ivey and other typical four year olds.  This past week it came to my attention that I had overlooked one step.  So slam - right in to the brick wall.  Needless to say, this is about how my heart glows and smiles and aches all at the same time - it is hard to imagine that even possible.

Thursday Ivey completed her last day at the church preschool. A very sweet moment in time. It has been a magical.  The opportunity to co-exist in a real classroom with kids who know she is different yet treat her the same. Her moment of innocent equality. She was part of the normal world – the children only saw Ivey – just Ivey – she is their friend. No being friends of the 'special' child; she was just special like all people should be. Never in her life will she experience a time like that again. The innocence in their eyes - well – it is what makes the difference.

And the members of her Ivey's League – they are heroes. Always unsung heroes.  The ones that don't make the six o'clock news. Yet in my world – I can't describe them in words. They were there each day, every week – being her eyes and ears – her legs. They created an invisible bridge – that was very much real-and presented her an opportunity that most children like Ivey never have. I love them more than they will ever know.   Ivey loves them.  And as for Mrs. M. - priceless.  Mrs. Mary unbelievable. Ivey existed in a room with only love and the desire to be her friend. How I wish we could bottle 'it' up and take 'it' with us.

Today I was at a birthday party with one of my boys. Normal. And then the mama conversation momentarily turned to the next school year. Next year's pre-K class. How I wish those parents would realize that Ivey would be a member of that class under normal circumstances. Despite the differences. Despite the fact that she will be at a different school from her brothers. Under normal circumstances she would be at their school next year. - How will I ever get through this next year seeing those children at that school and Ivey not there?

speaking up - or not - who would you be?

I love it when my California friend is on my wavelength.  It is probably a good thing there are many miles in between Georgia and California. 

But the grocery store has been a thing of interests around here lately. 

And here is Heather's latest post on Miss Zoe's blog, which is awesome.  Worth watching every single second!  Seriously watch every second -

Gwen

priceless

The Difference..

is our children. We are only the bridge between them. Our children are her peers. Will be her friends. Will support her as an adult when we no longer are able. Will include her through out her life as one of them.

They will rise above fear. Above self consciousness. Above the equipment. Above the stares. They will be guides. Her light will be their light, and their light will be her light.

The key is how we teach them. What skills we give them. The compassion we instill in their little heads and hearts - will make the difference.

After the last post - so disheartening -

This is what is real in Ivey's world -
LOVE and compassion and respect and acceptance +

And this is a group...cheering on the athletes at Special Olympics. Thanks Beth. One is my son - knowing the compassion, yet not quite knowing the real reason he is cheering. Not yet. He just knows to cheer. Supporting the participants. One of those athletes will one day be his sister.  And as for those cheering on either side of him now - they will cheer too. 

I’m Mad.

Anger. It comes in many forms. Each day is unique.  One good like yesterday. One like today - a roller coaster. 

Today – as I was transferring Ivey from the carseat to her wheel chair, I observed a car pulling into the handicap space across from us. Anger. Out bops the woman. She unloads her pharmaceutical rep baggage (lots of it) and sashays to the elevator, baggage and 2 inch heels.

It was only when I was in mid sentence did I realize that I was actually projecting my voice toward her (loudly) across the parking deck. Oh my, my thoughts escaped my mouth and I was actually questioning the validity of her 'handicap'. She stood stunned. As was I.

Considering our location – the parking deck below Children's at Emory – I was enraged. This makes the third drug rep to have a handicap tag – I'm mad.

And then there was yesterday. I have XM radio in my car. Occasionally I listen to one of the comedy stations. Laughter is the best medicine right?

Well, as Ivey and I headed to one of her appointments – this is what she was bombarded with – with no warning. This is our battle folks. I can handle the one idiot standing telling his horrendous joke; what I can't handle is the theatre of people, those who walk amongst us, validating his joke. Laughing.

What do you guys think about this?

Remember the 'Retard Speech'?
Imagine placing any other 'minority' name in this 'joke' and the backlash that would ensue.

Click here, watch, then come back.
Ralphie May - Retards

Gwen - Ivey's Advocate

The Coaxing Of the Curly Hair

As we (Ivey and I) were waiting on the elevator to take us up to the fifth floor for her doctor's appointment yesterday there was a sweet man waiting. He looked at Ivey and grinned then proceeded to wave at her and make baby talk with her. Ivey never acknowledged him. I just smiled and looked down at her. I thought it best to not embarrass him in front of the gathering line for the elevator.

Doors opened and in we squeezed.

Considering that Ivey was in her chair there wasn't much standing room in the tiny little elevator. He was standing beside her. He looked at me and said, "Is she, uh, well, how is she, good, I mean, uh…" Tongue twisted for words.

"Oh, she is great. Doing great now. She is blind and she doesn't hear well that's why she didn't acknowledge you before."

He said, "Oh that is good news, and uh, well, I um…... I tell you, that is some curly hair she has!"

"Yes sir, it is. I don't know what to do with it most days."

We were at our floor – the doors opened – I told him thank you for asking about her and off we went. Chances are we will never cross his path again.

But he confirmed, again, what I know to undoubtedly be true.

Early on at a conference I attended, one of the instructors suggested parents place an item on the wheelchair, walker or on the child – to give people a focal point. Something that they like, something to give others as a topic for conversation. An inclusive talking point.

I stumbled over that for a while. No matter what I tried it went unnoticed. The focal point was always the tubes, eyes/lack of, hearing aids, pump …..

And then her hair started to finally grow. It took three years for that blonde hair of hers to spiral out of her head and now, a year after her hair finally sprouted, I have my list of confirmations. Her hair is really the first thing most notice about Ivey, give or take, especially from a distance. Her talking point.

Not only is it her focal point, people ask me all the time if they can touch it. Just feel those spirals.
It's amazing how things work out. Ivey needs touch more than anything in this world – and she sprouted hair that lures people to want to touch her.

I would have to say that didn't happen by chance – considering that her mom, dad and two brothers got notta in the curl department. Must've been another one of those ordinary miracles –

Thanks miracle man.

The Special Mother

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Happy Mothers Day

Some Mothers Get Babies With Something More


Lori Borgman
Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

R. E. S. P. E. C. T.

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R.E.S.P.E.C.T Ivey's hands - they are her eyes and her ears!!!  

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Our hands ALWAYS reside under Ivey's hands. She holds our hands.

This is called HAND-UNDER-HAND. 

This is the correct technique for communicating with and for teaching Ivey.  Whether showing her something, introducing yourself or signing with her, this is how we all do it. 

By doing these steps, we will create a SAFE environment for Ivey.   This will encourage her curiousity, flame her independence and most importantly - it reinforces that we/you are on her TEAM providing a safe world. 

Suprises are not fun to a deafblind individual.  Just think about it the next time you hear a bump in the night - now imagine that bump grabbing you and making you do something without knowing who or what it was - ugg- how scary!!!  That is her life. 
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R.E.S.P.E.C.T Ivey's hands - they are her eyes and her ears!!! 
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STEP 1

• VERBALLY (loud clear voice if she doesn't have her hearing aids) tell Ivey you want to 'play' with her, 'show' her an object, read a braille book or 'talk' with her. 
• TOUCH Ivey on the arm bellow the bend of her elbow.  This will let her know you are about to offer her your hands.  She will begin to reach for your hands...preferably your thumbs.
• SLIDE your hands under her forearms to her hands.   

STEP 2

• Let her hold your hands as you EXPLORE a new texture, object or surface - Let her hold your hands as you SIGN with her.  (I'll teach you her signs) NEVER grab her hands or force them to touch.She will resist.  It's not SAFE to her.

STEP 3

• Always, always, always tell Ivey when you are FINISHED, both verbally and with the sign 'finished'.  Make sure if you are leaving to always tell her GOOD-Bye too.

Remember hands are sensitive especially the palms - introduce new textures on her arms or legs first.  

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R.E.S.P.E.C.T Ivey's hands - they are her eyes and her ears!!!
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