USB Medical ID Wrist Bands

After posting about the medical ID bracelets last week, I got an email from one of our readers also suggesting USB Medical ID Wrist Bands. I think this is such a great idea to store a full medical history. There are lots of places to purchase this type of ID band, so if you'd like to get one, just take a peak at google and pick out whichever style/price/etc that will work best for you!




If you have any special needs resources to share, please email kidzorg.blogspot@gmail.com. Thanks, as always, for all your ongoing support!

Enjoy & Remember

Happy Memorial Day!

Enjoy your freedoms....


But remember why we have them....

By it I Can See

In My Heart Always

Come stop your crying
It will be all right
Just take my hand
Hold it tight

I will protect you
From all around you
I will be here
Don't you cry

For one so small,
you seem so strong
My arms will hold you,
keep you safe and warm
This bond between us
Can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

You'll be in my heart
No matter what they say
You'll be here in my heart, always



Why can't they understand
The way we feel?
They just don't trust
What they can't explain
I know we're different but,
Deep inside us
We're not that different at all

Don't listen to them
'Cause what do they know?
We need each other
To have, to hold
They'll see in time
I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time
I know
We'll show them together

Oh, you'll be in my heart
No matter what they say
You'll be here in my heart,
I'll be there always
Always

I'll be with you
I'll be there for you always
Always and always
Just look over your shoulder
I'll be there always

Have a Fun Holiday Weekend

Have a great weekend, everyone!

Sleep, Baby, Sleep

Thank you to Beth of odd girl out...? for sharing this.

"There was never a child so lovely,
but his mother was glad to get him to sleep."
-Ralph Waldo Emerson

Bending

I am asked to be flexible
So I bend this way and that
Stretched to the limit

Between too much and not enough
Lover and fighter
Parent and therapist

Between reason and emotion
Fact and fiction
Science and faith

I am stretching between wife and mother
Better and worse
Me and us

Between a boy and a girl
Four and two
One with Autism, one without

Between joy and fear
Hope and despair
What is and what might be



I am bending until my back hurts
And my heart aches
I am bent

But never broken.

Written by Jennifer Post of Want a Peanut?
Re-posted with permission.

Timelines

Timelines

We all live by them....

We hurry to get our dishes done. We hurry to pay our bills on time. We hurry to put our laundry away.

We scurry from one place in time to another each and every day.

Time flies whether you are having fun or not.

When you are the parent to a special needs child you still live by a time line though the scurry is often different.

We hurry from one appointment to another. We hurry learning one diagnosis and then another. We hurry stretching one muscle and then stretching another.

But still, we hurry.

This week, our hurrying around stopped.

Under the worst of circumstances, a conversation brought me to my knees, and all of the world fell on my shoulders. The dishes could wait. The laundry didn't matter. The appointments weren't important at that moment.

As most of you know, the seizure monster has made his existence very known in our Matthew's life. He doesn't seem to want to go anywhere anytime soon. In fact, over the past week we have had two seizures that caused Matthew to turn blue.

Matthew is not a prime candidate for a lot of cutting edge treatments currently available. The ever popular brain surgery is not an option for us. Matthew's seizure monster takes up residency all over his brain. Removing the part of his brain responsible for seizures would leave nothing. The VNS is a possibly, however, it is a scary surgery. Matthew doesn't do well with sedation. A day surgery can often turn into quite a big deal for us. We are not sure a doctor would consider us for this. We are not sure we would consider this for Matthew. There are just too many risks.

Currently, there are only a few medications left we haven't tried. We are just a month shy from seeing a new neurologist who hopefully will bring a new plan to our sweet boy.

But on to the wretched conversation....we have one doctor we trust. ONE! He is our pediatrician. He listens. He cares. He does more than what he gets paid for. He answers every silly question I ask (and believe me I ask a lot.) He is simply amazing! I had to call for referrals. Per the usual he asked about Matthew's seizures. I filled him in on the progression since we had last seen him. I explained how Matthew had stopped breathing twice in one day.

He politely asked me about my CPR and First Aid. Luckily, it is just now outdated and in the process of getting redone. We discussed increasing one medication to see if we could decrease some seizures.

Then......the sky fell.

He said Matthew's prognosis was not good. The seizures were increasing too quickly, and he was not a good candidate for other treatments (see above.) We talked about what this meant. He told me we should be prepared and should remain guarded regarding Matthew and his seizures.

Take a moment and let that sink in.

How do you stay guarded regarding you child?



You simply don't. You cry. A LOT!

You lean on friends. You hold you children and pray for wisdom. You cry some more. You lose sleep. You look awful. You think awful things.


And then you pick yourself up by your boot straps and you go on.

Because around here....no one gets to put a timeline on our child.

Thank goodness, we have someone much bigger in our corner. Our God is bigger than doctors and diagnoses. He knows what is going to happen. I have faith in His plan.

I am terrified of every single day now. Matthew slept all night long the night after I spoke with the doctor. He hadn't slept all night in weeks. At 6:30 in the morning, my eyes popped open recognizing there was not a cuddly little boy in my bed and my heart started to pound. I couldn't breathe.

Believe me, you don't want to be my friend or know me right now. But we will get through this.

We putting a positive spin on this. We are creating a "Matthew's Most Awesomest Things To Do" list. Anything and everything we feel he needs to experience will go on this list, and one by one we will start crossing them off. We are not doing this because we feel the doctors may be right.

We are doing this because in light of what they said we have come to realize that no day is to be taken for granted. Experiences are too important to be put off because of dishes or laundry.


Our children are too important for timelines.



So I ask you, dear blogger friends, tonight hold you children a little closer, stay up a little later, sing an extra song, and don't take another day for granted.

Believe me, we will not!

Charlotte's Poems

Yesterday Ella, age 2, asked me where her sister was. I replied that Ava was upstairs asleep. Ella said "Where my other sister? Where Lily?"
It was the first time Ella has asked about Lily, unprompted.
I went upstairs to gather myself and stopped in front of a framed copy of two poems I wrote for Charlotte, one a few weeks before she passed, and one right after.

Goodnight Boo

In Boo's room all painted in pink
There's a feeding pump with lights that blink and
alarms that ring if the tube has a kink.
And an IV pole, and a feeding bag full
of Pediasure, good for body and soul.
And an air purifier and a humidifier,
and a pulse oximeter with five feet of wire
and a night stand and floor fan
and a red lit probe taped to Boo's foot or hand.
And Breath Rite Strips and Tender Grips
and Albuterol and Tylenol
and a Princess nightlight shining down the hall.
Goodnight Boo.
Goodnight to all your special things too:
Goodnight wire and humidifier
Goodnight fan and IV stand
Goodnight Grips and goodnight strips
Goodnight meds like Prevacid
and Goodnight to pumps that keep you fed
Goodnight to steady vital signs
Goodnight to tube and probe and lines
Goodnight to blinking lights and beeps
Goodnight to Boo, now fast asleep.

And the other:

In Charlotte's new room filled with Glory and Light
A dear little girl rests soundly tonight
and Grandmas and Grandpas have tucked her tight.
A brown dog rests her head at the foot of her bed
near a big stack of storybooks just freshly read.
She listens to lullabies with good little ears
Stretches little strong legs which brought her here
and of needles and haircuts she has no fear.
Her only regret is she knows we are sad.
She looks down and says "Goodnight mom and dad-
I'm safe and I'm happy in this beautiful place
I'm strong and I'm glad there's no tube on my face.
When I first arrived with a dance and a twirl
Jesus held me and said 'Well done little girl-
You did just what I sent you to do--
You brought nothing but joy and perspective too
And all those who met you saw Me in you.'
They gave me a big party with suckers galore
and beads and monkeys, but daddy, there's more!
I can do all the things I could not do before.
I'm glad Ella is with you, you'll be alright
Wouldn't want you to miss getting up in the night
and when missing me is just too much to bear
I'll send a kiss through my sister, you'll know I am there
Goodnight mom and dad, I'll see you so soon
I can't wait to show you my new princess room!
Thank you for taking such good care of me
Now I'll watch over you and my whole family."

Everything is fine. My girls are fine. And I know just where they are.

Not Acceptable R-Word PSA

This PSA aired only a few hours ago, and already it has undergone significant scrutiny. The criticisms I've heard/read include that the slurs used at the beginning are outdated and/or too offensive to even be used. However, I think that is exactly the point.... those words ARE offensive and that's WHY they became a thing of the past. That's exactly the message the special needs community is trying to send about the R-word. It is offensive. It is not acceptable. It HAS to become a thing of the past.



Have you had any experiences trying to spread the word that the "R" word is unacceptable? I've asked people I interact with to stop using it when when I've heard them say it (usually in reference to themselves). I try not to lecture or act offended, but explain that I know they didn't mean to offend and I understand that it's unfortunately a common saying. Then I go on to explain that since I've become Chloe's mom, I've come to understand what a cutting word that is and when used in jest, it is not funny but highly degrading. People always seem supportive and understanding when I bring it up, which is why it shocks me how often I hear them use it afterward. Do they forget? Do they think I'm being oversensitive? Do they just not care? Since I can't answer those questions definitively, I politely remind them again. And I will remind them again and again and again.... as many times as I have to. I may just send this video with a short personal message tomorrow, in another attempt to get the point across.

Share your experiences as well! And please continue to spread the word....

Free Sign Language Resource

I'd like to introduce you to a great new resource, www.babysignlanguage.com.



The website contains these free digital resources, among others:

• Free Printable Flash Cards

• Free Printable Wall Chart

• Free Tutorials

• Free Video Dictionary

• Facebook Community

AbleGamers

Article by JOHN BRANCH
Published: March 5, 2011
New York Times

Hans Smith has spastic quadriplegic cerebral palsy and a love of baseball. A 24-year-old student at Boise State, he uses a wheelchair and cannot dress or feed himself but appreciates the nuances of sacrifice bunts and cutoff men.

Hans Smith, who has a form of cerebral palsy, consulted with Sony designers to adapt the PlayStation 3 game MLB The Show for players with disabilities.

Playing baseball on a field with friends is not an option, so Smith enjoys the game on his PlayStation 3. Even that can be frustrating because he does not always have the dexterity to direct his video game players to do what he wants.

That should change with the release Tuesday of this year’s version of MLB The Show, the most popular baseball video game. To complement the beginner, experienced and expert modes, Smith worked with a Sony design team to devise an A.D.V.A. mode. It stands for Association for Disabled Virtual Athletes, an organization that Smith is starting with the hope of making games more accessible to those who can play sports only on a video screen.

“Now, whether you win or lose,” Smith said, “it will be based upon your ability to know the game — to know when you want to do a double steal, to know when you want to do a squeeze play, to know when you want to bring your infielders in — instead of, ‘Oh, no, I can’t hit that button.’ ”

For people like Smith, another hurdle has been removed by the design team at Sony.

“A.D.V.A. takes the controls of the beginner, and the skill and the strategy of the expert, and mixes them together,” said Kolbe Launchbaugh, senior designer of MLB 11 The Show. “What we’re trying to do is give you an easier way to physically play the game, but it’s mentally challenging.”

The AbleGamers Foundation estimates that about 33 million Americans with disabilities are video game players. Smith’s concern involves only sports-theme games.




“There is a demographic here that hasn’t been reached,” he said.

He did not intend to become another advocate. Smith was so thrilled by MLB The Show a couple of years ago that he sent a thank-you letter to the design team for giving him the chance to play baseball.

“For me, that was as real as it was ever going to get,” Smith said.

The design team at Sony Computer Entertainment America was moved.

“This all started not because of the letter, but because of what people did about that letter,” Smith said. “If they had chosen to ignore this letter, none of this would have ever happened.”

The design team invited Smith to its studio in San Diego, where he spent two days in late 2009. Smith sat in on meetings, and he was asked for suggestions to make the game better. He became sort of a consultant to the 70-member design team.

“We really liked the guy,” Launchbaugh said. “Really cool kid. Really smart. He fit right in with our team. We had a great time, and it kind of became a friendship.”

Eventually, it led to the A.D.V.A. mode. Launchbaugh said MLB The Show has about 70 settings that can be tailored to individuals. The A.D.V.A. default settings, set to Smith’s recommendations, can be altered.

“Last year, you could have gone through all of the settings to what A.D.V.A. means today, but it would have taken you about 20 minutes,” Launchbaugh said. “And you would have had to know exactly what you were changing and what it meant. This is just a really nice way to have members of his organization say, ‘O.K., I can just start with this setting, and it’s going to be compatible with me.’ ”

For Smith, a big issue was when he played the game online against other gamers. Until now, online competitors had to be on the same settings, “so the first inning they’d always be up, 6-nothing,” Smith said.

The new edition allows gamers with different settings to compete. The other player simply must accept the challenge.

Smith controls his wheelchair with a joystick, but the PlayStation controller has 12 buttons and 2 joysticks, demanding an array of quick-fingered combinations. During an at-bat, for example, base runners are usually controlled by several buttons while the player anticipates the pitch.

“This is difficult because you need, like, four fingers to achieve this,” Launchbaugh said. “So what we’ve done is, while you’re batting, base running is automatic. Once the ball is in play, you can control your runners.”

Fielding a ball usually means moving the defender into position with one joystick, then using buttons to throw. In A.D.V.A. mode, fielding the ball is automatic, but deciding where and when to throw is up to the player.

Swinging a bat requires a single button push.

“It’s not dumbing it down,” Smith said. “It’s trying to take the physical factor and remove it, so that the game becomes more of a mental competition.”

Smith plans to go live with a Web site, advasports.org, on Tuesday to coincide with the release of MLB 11 The Show. He does not know where all this will lead. But in a video game world where reality is increasingly treasured, and where more game systems use motion sensors to enable players to control the action, Smith wants to help ensure that millions are not left in technology’s wake.

“That kind of freaked me out — what if it got to a point where everything is motion?” Smith said. “I understand that it’s a marketing thing, and I understand that they’re trying to get people up to move. They’re trying to make video games look like a very good exercise option.

“But for people like us, it’s, ‘Oh, no, what are we going to do?’ There are these people out here who can’t do the motion; they can’t be the controller. So depending on how well the A.D.V.A. does, I hope in the long run, there will be more systems and more games that do this.”

The Love of Christ

Ephesians 3:17-19
(print available here)

We're All in This Together

We're all in this together,
through the thick and thin
we're all in this together
in the losses and the wins
In the light of day there's always a place
to love the world we share
When the ones we love need the best of us
we'll find each other there

We're all in this together,
in the sun and the rain
We're all in this together,
in the laughter and the pain
When the tears are cried on the darkest nights,
we'll hold the ones we love
When we finally see all that beauty,
we'll sing a grateful song

DIY Sensory Fun

Are you ready for an post jam-packed with ideas? You got it! In an ideal world, I would sprinkle these ideas throughout weeks in many posts, but, well, it's not a perfect world so I'm subjecting you to idea-overload. I hope you'll forgive me AND I hope you'll share any ideas you have tried or found that you think would be fun for the special needs kiddos! Please also let me know if you try any of these ideas, I know I'm going to!!!

Images and captions are linked.

Counting Coconuts is such a fun blog that shares
lots of ideas for themed sensory tubs!
You've GOT to check it out!

Texture Boards idea from The Felt Mouse

Texture Brushes for sensory art idea from Pink and Green Mama

Pipe Cleaner Tic Tac Toe idea from Creative Jewish Mom

Jar Lid Letter Game idea from No Time for Flash Cards

Veggie Garden Sensory Box from Modern Parents Messy Kids

Felt Game idea from Ohdeeoh

Story Stones from Red Bird Crafts
such a creative and perfect idea for children with special needs!

Knitted Ankle Bells from Mini-Eco

Boardilla for fine motor skills idea from Ohdeeoh

10 Ways to Extend Water Play ideas from Childhood101

Bubble Fun

Here's a fun idea from Your Therapy Source (love that site!):

a fun outdoor activity to encourage oral motor, fine motor and eye hand coordination skills using bubbles and household items....