Max absolutely loves being in water so much, my husband and I have joked about buying him a water bed. So he's in heaven when he's in the pool. Bonus: the pool toys give him all sorts of opportunities to work his fine-motor skills. As demonstrated here! 

Max has been getting physical and occupational therapy since he was a month old. He had a stroke at birth, so we knew he was at risk for all sorts of problems, and I got him into Early Intervention right away (I literally called them from the NICU). While he may sometimes get distracted during speech, occupational or physical therapy, for the most part he considers them a normal part of his life.

But sometimes, as I'm sure you've realized, the best therapy happens when kids are playing. In the bath, Max manipulates a watering can, colors on the wall with bath paints and makes pictures with shaving cream. In the pool, he grasps and throws a ball, pours water from buckets, kicks around and works hard on balancing.

I have to admit, it's therapeutic for me, too, to see him enjoying himself so much. When Max is happy, the angst I sometimes have from being a parent of a kid with special needs seems to just trickle away.

Ellen blogs daily over at To The Max.

"It took me four years to paint like Raphael, but a lifetime to paint like a child."

~Pablo Picasso

Welcome to Magic Marker Monday! If you haven't heard about Magic Marker Monday yet, click here and then hurry right back…

A few more fireworks for your weekend…

What about you? What has your little artist been up to this week? Link up and join in — we can't wait to see!

Want the Magic Marker Monday button code? Click Here!

Find out more about Michelle
Read Michelle's weekly column
Meet Michelle here each Monday for Magic Marker Monday
Questions? Please feel free to email Michelle at childlif[at]gmail[dot]com or come and visit her at In The Life of a Child

Because, really, it couldn't have anything to do with those costly ethics complaints turning her into a lame duck Governor or anything like that.

Or the fact that the media couldn't keep their poison arrows pointed only at Palin, they had to take below the belt shots at her children too.

Then again, maybe she did decide to take the book money and run.

Eh, what do I know about politics? While I may be mostly Republican at heart, I haven't voted straight party lines since the first time I visited a voting booth. And Palin isn't one I would have chosen to be the next GOP pick.

However, I do know a little bit about advocacy. How what is written in print, and seen on the big screen can effect the public's perception of those with special needs. And how public perception can translate into action where discrimination and abortion are concerned.

How many of us who are parents of children with special needs were greeted with messages of condolence when our children were born?

How many of us lost friendships, family, and even spouses because those who we believed would be in our lives forever suddenly couldn't handle the thought of being around a retard.

The idea that the life of a person with special needs is somehow worth less is only intensified when Barack Obama cracks a joke by comparing himself to Special Olympians.

So, Mr. President. How 'bout that wasted failed stimulus money? Now THAT'S a joke. Bi-partisan even!

One of the reasons Sarah Palin gave for making her decision for stepping down from office included the hurt her family had encountered by Trig, her son with Down syndrome, being mocked.

While Palin may have opened herself up to attacks on her actions, her children, most especially Trig, did not.

Yesterday, Erik Sean Nelson, a 'comedy' writer for the Huffington Post, had this to say concerning Palin's reasons for resigning:

She said that the “world needs more Trigs, not fewer.” That’s a presidential campaign promise we can all get behind. She will be the first politician to actually try to increase the population of retarded people. To me, it’s kinda like saying the world needs more cancer patients because they teach us such personal lessons.

Her first act as President: To introduce a Pre-K lunch buffet that includes lead paint chips.

Her policies will increase jobs because Wal-Mart is building new stores each day and someone has to be the greeter.

This will lead to smaller government because fewer Americans will have the cognitive ability to hold a government job.

Kinda makes you wonder if Nelson's been channeling a bit of Letterman, no?

What I find really funny is how that once an apology has been issued, everything is then supposed to be all better. Gee, he's sorry he wrote or said that.

But not for having those sort of thoughts to begin with.

And it is the people who harbor these type of thoughts that scare the hell out of me. The ones who will try and squeeze in those ideas whenever and however they can.

And then try to disguise them with the cloak of comedy.

Each time I write a post like this I receive many emails telling me to just let it go. Ignore it. It isn't worth my effort. Quit being so sensitive. It wasn't meant in that way.

But I disagree. Vehemently. If nobody stands up against this type of hate speech, then it slowly becomes an acceptable norm.

Whether you have a child with special needs or not, EVERYONE should take a stand against tearing down the worth of another life.

As you work to make the world a better place for my child, you are ultimately insuring the world will be a better place for yours.

Tammy Hodson is, in Erick Sean Nelson's words, one of those moms who "hold off pregnancies until after their 40's just to mix up some chromosomes'. She the proud Mama to Parker, her 4.5 year old with Down Syndrome.

You can find her at her personal blog, Praying For Parker as well as 5 Minutes for Special Needs.

When Andrea and her husband were pregnant with their first son, they weren't aware of the challenges that lay ahead. The plan was to eventually go back to work after the baby was born. Plans quickly changed when Reece was born with Down Syndrome.

Like many unsuspecting birth parents, she and her husband grieved for quite some time after Reece's birth. The life they had envisioned for themselves and their first-born-son was turned completely upside down. Nothing would be the same. But they found resources and support. In time, Andrea found the strength to turn a challenge into a mission. Reece's Rainbow was a vision Andrea turned into reality early in 2006.

Reece's Rainbow is an organization specializing in finding 'forever homes' for children with Down syndrome given up for adoption (or simply abandoned) in countries where anything less than 'perfect' simply isn't acceptable.

I can't begin to count the times I have visited Reece's Rainbow, heavy with the knowledge that had Parker been born in one of these countries he would have surely ended up in an institution where his life would have ended in an early death.

My heart breaks for any child who finds themselves in need of a loving home.

But I'm not the only one. Chelle, the inventor of Dapper Snappers, was also touched by these beautiful children. And she has vowed to do something about it.

For June's Fundraising Week, Chelle is donating 20% of online sales of Dapper Snappers from June 28th until July 4th to Reece's Rainbow. Even if you don't need Dapper Snappers, Chelle encourages you to donate to Reece's Rainbow and help make a difference.

You can find out all the details at Dapper Snappers Blog.

Even the smallest of donations can help to save a child's life.

Don't believe me? Talk to these parents:

Dreaming of an Angel

Bringing Kellsey Home

Facing Life Head On

You can also find Tammy and Parker hanging out at their other blog, Praying For Parker. And on Twitter where they Tweet as ParkerMama.

I was browsing at our local Barnes and Noble when I noticed an adorable toddler looking at me from his stroller. He was wearing a San Francisco 49er t-shirt– and a heart shape pendant around his neck. His mother was looking at the book "Your Three Year Old" intently.

"Your purse is pretty!" the little boy said to me cheerfully. "Pink is my favorite color!"

"Uh, oh, Mom…" I joked, and as soon as I said it, I wished I could suck the words right back. Me– of all people. After all the comments I had endured.

"Oh, I know," laughed the young mother nervously, "I think he's going through some kind of stage." She looked back down at her book, clearly hurt by my thoughtless comment.

"Well, he looks like a winner to me," I said as I walked away. I would only dig myself deeper if I said anything else like "of course it's just a stage" or "it's just fine even if it's not just a stage."

–

I thought about the little boys mother a lot that day, and hoped that the line I had thrown her hadn't ruined her day.

I remembered the time that I was at the grocery store with Matthew when he was about 8 years old. He ripped open a bag of Skittles impulsively as I stood at check out and the multi-colored pieces went everywhere. As I scrambled to pick them up, Matthew bolted for the exit, laughing crazily. I scooped him up just as he rammed into a stern looking woman in her sixties.

"I am so sorry," I said as she shook her head disapprovingly.

"Who's in control here?" she mumbled loudly as I pushed my cart out the door.

And then I rushed to my minivan with Matthew, fell in and cried, my black lab Katie looking on sympathetically. I was  as much hurt as I was angry, and was tempted to ambush the woman as she left the grocery store so that I could explain Matthew's behavior. This, of course, was back when so few people knew about autism, and I myself had a hard time putting it into words. So I let it go.

"People are only mean because they don't understand," said my father later that day.

"You never know," he joked "maybe the woman's cat bit her today, and she was in a bad mood and took it out on you. Or maybe she stubbed her toe…"

Or maybe she just made a thoughtless remark like mine. I'll never know.

But if I ever run into the young mother from the bookstore again, and she looks like she needs a hug, I'll give her one.

Laura

Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM

and a contributor to A CUP OF COMFORT FOR PARENTS OF CHILDREN WITH SPECIAL NEEDS.

She writes each Friday for 5 MINUTES FOR SPECIAL NEEDS.

I used to sit at this window and watch my children playing outside.

I used to sit and wonder what had gone wrong and how I was ever going to be able to pull myself out of the mud.

The window was my view to the outside world because I was too scared to leave the house.

The window was an escape.

The window, filled with butterflies and blurred by my unrelenting tears, created rainbows.

From my place I could see the bright oranges of the autumn sunrise and the heavy pinks of sunset as my days moved as fleetingly as the clouds that passed me by.

The trees that enveloped and grew around the window were places that I could take myself to, the patterns and colours lending itself to my retreat from my terrible reality that my baby had died and that I was still here.

Left to wonder and wish my life away.

It saw me through those first, grief stricken months:

The Window.

Tonight I sit here again.

The children have come and gone, some to sit for a while, some to look through the glass, touch the butterflies that flutter here still, five years on,

others who want to talk.

Life moves around me in a torrent flow of gangly arms and legs, familiar faces and emotions.

Five years ago I wondered about my son, that I would never know him, that I would never see him reach all the milestones of his sisters before him.

I'm wondering about my youngest girl tonight and what will become of her.

She has been sick.

Too sick to move.

She is tired.

I am tired.

We had four wonderful weeks where she was in the best health that she has ever celebrated

and it was a celebration.

Now, we are almost back to square one.

The infection in her ears is Pseudomonas.

The very same that she grew in the hospital, that the infectious control doctors chose not to treat.

The very same that made her terribly ill twice before.

Also; the Staph is still there, underlying, not as prolific

The treatment for the first is ear drops.

The ear drops wipe out the good flora and pave the way for the Staph to take hold.

The staph and every other nasty spore, mold and fungus within a five kilometre radius, it seems. I guess the MRSA is the thing that concerns me the most.

The illness and high temperatures cause her adrenal system to be compromised and so I have to push her prednisone up, which in turn supresses her immune system more than it already is

and around and around and around we go.

Through the window, the moon teases me, mockingly, in a half crescent wink.

I can't see the funny side tonight.

The immunologist has declared that the IVIG will not be increased.

The paed is not sure what to do next. There is talk of more uneccesary testing. What he does know is that he does not want her in the hospital…yet. There are too many nasty things for her to pick up, floating around in its corridors.

I am cross that the PICC came out so soon. I am cross that, after all that, we have just gotten back on the same ride.

It's just a different day.

The paed is cross because I am taking her medications into my own hands.

I want to avoid the hospital too.

This is a lose/ lose situation.

For Ivy.

We are once again in limbo, with a half -well, waife girl and the horrible, hospital aquired infection, tagging along for the ride.

I hate this.

I have spent the afternoon staring out of the window, the trees whispering to me, tempting me to far away places, to leave this reality behind me.

I want this to be over.

Tonight as I stare out the window, my mood is as black as the descending night.

Originally posted at Three Ring Circus

Summer is here and the kids are at home. Are you looking for a tool to sharpen skills and keep them engaged over the summer months?

Today I made a home visit, driving through our local Indian Reservation of the Cayuse and Umatilla, winding along the Umatilla River out into ranch country.

I was taking a laptop uploaded with the Clicker 5 by Crick Software, out to the most beautiful piece of heaven you could want to see - straight out of a Louis L'Amour western. I drove up a gravel drive, under the hanging brand sign of the ranch and drove up to the main house, where a little cowpoke was waving me down on the the porch.

The family greeted me and I had a chance to sit with their little girl who just finished first grade. Mandy, (I will call her for this post) has Todd's Paralysis, a side-effect of epilepsy that comes on as a type of seizure. She has several in the early waking hours of the morning before school on a regular basis. They have effected her right side and she uses her left hand to do most things.

Her speech is pretty good. But she has to put a lot of effort out to be understood. Her teacher at school shared that she has mastered the material for first grade, but has difficulty writing and so she cannot get her work done and handed in at school with the other students in her class. The hope is that there would be something she could use with a laptop to type and print her work.

I got a loaner laptop loaded with Clicker 5 to leave with them to play with for a month or so. Clicker 5 has a talking word processor window ans a pop-up keyboard on the screen. It also has editable buttons in various templates that allow you to build word walls, build you own guided sentence writing activities complete with sound, animation and pictures that correspond to the words. My hope was that Mandy could begin typing using mouse on the pop up keyboard and use word wall buttons where possible as well to practice writing skills over the summer in prep for Fall.

We set up the introduction demo that let her go through the program and see how it works and try various activities. She needs to develop mouse skills so she can access the buttons on the screen, but with guided practice from Mom and Dad, she was pointing out the correct words for fruits to match pictures and her reading skills and word recognition was excellent.

I left them with Dad building a word wall page with mommy, dadddy, her horse, ranch, etc. They were building a sentence for her to tell about her horse when I left. The family was up and running with the basics to use the program within 15 minutes.

If you have a young student home for the summer that needs text to speech, picture linking to words and opportunities to build dynamic pages for inspiring writing, check out Clicker 5. The cost is $229 for Windows/Mac.
All the best to you,
Lon

Lon Thornburg is an assistive technology specialist and professional development trainer who lives in Oregon and serves 12 districts in 7 counties. He hosts the No Limits 2 Learning Blog and The No Limits 2 Learning Live Talk Show on Blog Talk Radio. He is sharing as a contributing writer to 5 Minutes for Special Needs.
 

And no, it's not for my TV, it is for my son.

My son who abhors loud noises; the one who in every movie we have ever seen in a theatre has to cover his ears for most of the movie. The one who hates the shrill sound of the fire drill at school.

THAT son.

When we are home, I hear him from every corner of the house. If I am standing at the front door, I can hear him yelling in the office. Granted, we do not live in a Taj Mahal or anything, but if you are in the office there is a fairly good chance that if the doorbell rings you will not hear it. He is loud, and not just in voice. Sometimes he feels the need to laugh at something he sees. His laugh is forced, and he feels the need to laugh loudly so you understand that he thinks what he is watching is funny. Almost like canned laughter, but louder.

He will scream in the car sitting right next to you if what you say he doesn't like, or he is scared of anything you say or see.

I don't understand.

I've tried talking to him. I've tried showing him by recording his voice what he sounds like. He doesn't care.

"I'm just being me, Mom!" he says.

I know that. I know that it is him, and it has not been easy to show him differently. He doesn't want to hear it.

He, apparently, just wants to hear the sound of his voice. He also wants the people two counties over to hear it too.

Pass the earplugs, please?

Also, am I the only one dealing with this? Are there other parents looking for the volume control in their children? Am I the ONLY one who is constantly shushing her child?

Am I?

Shash is trying every remote control in her house to find the one that will at the very least turn down the volume of her children so she can enjoy a quiet moment the family pool. Click over to Diary of a Crazed Mommy to read more about her life and her amazing family.

Until recently, there was only one lab in our town for blood work. Even our local hospitals would use that one lab for most of their hospital lab tests. The problem with having only one company was that if that one company wasn’t exactly what a patient wanted, it was just too bad.

Ashley is a very tough kid for a blood draw. Because of all the medical procedures she has endured in the past, a great many of her veins are scarred or ‘blown’. Even the best of the lab techs would have a tough time finding a vein and then keeping it open long enough to get the amount of blood needed.

So, when Ashley’s neurologist suggested we might want to try a new lab company that had recently opened in our area, I was all for it. The lab hours were convenient, and the location was even more convenient. When we arrived, we were greeted warmly, and all our paperwork was handled very quickly. Then the moment arrived to put them to the test – to see how they would handle getting blood out of Ashley.

They called us back into a small cubicle and suggested Ashley just stay in her wheelchair. That was the first good thing they did. Trying to get Ashley to move to the blood stick station would have not gone over well at all, and probably would have required physical force from multiple people.

As they prepared the syringes and other supplies, the two techs in the room with us were talking very loudly – good thing #2, understanding Ashley’s significant hearing impairment.

They talked to Ashley, not through me – good thing #3, recognizing Ashley as her own person.

As they prepared Ashley for the procedure (alcohol wipe, tourniquet, etc.) they were also talking in a soothing tone and stroking her arm at the same time – good thing #4 to realize that touch is very important to someone who is blind and scared.

They continued to talk to her, telling her how beautiful she was and how brave she was – good thing #5, continuing to calm her when she was in a strange place with strange people.

The tech that had planned to do the needle stick asked me where the best place would be – good thing #6, listening to Mom.

Because in Ashley the best place right now happens to be the top of her wrist, the first tech said she was not the best at sticks there and suggested the other tech might want to take a look. That second tech was comfortable with wrist sticks and said she would be glad to do it – good thing #7, understanding one’s weakness and calling for reinforcements.

They were quick with the blood tube switches, and gently pulled the needle out of Ashley’s wrist. Still keeping their hands on her to calm her, they held pressure on Ashley’s wrist until she stopped bleeding. I had told them that Ashley hates bandaids and would not leave one on. They listened and opted for direct pressure instead – good thing #8, admitting they don’t always know best.

In less than 15 minutes, we were in, registered, had blood drawn, and were heading home. We have had so many blood draw nightmares in the past, that this one was almost a dream come true. I am so thankful that this new company has moved to our town, and so glad that we have found them.

Thank you, Carilion Labs!!

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.