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

I recently visited the ranch home of friends with a first grader. She has Todd's Paralysis, which involves epileptic seizures with motor loss. This impacts the girl's right hand and she has not been able to develop her writing at school. We are exploring some assistive technology tools for her, and Clicker 5 on a laptop is our choice to try this summer. You can read my post on the visit with her and a description of Clicker 5 with links below. I hope you are having a great summer!

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.
 

Some days, I swear I'm looking for the remote or the volume control.

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.

I get so used to medical procedures being difficult for Ashley that when something good happens, it’s like receiving an unexpected gift. We received one of those gifts recently, and I want to publicly thank Carilion Labs and the wonderful folks who did blood work for Ashley yesterday afternoon.

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.

What do you do when you are at your Great grandfather's 90th birthday?

You lie on the floor, amongst all of your relatives and play with your helicopter, of course!

Noah gets down to the nitty gritty of the celebrations.

Got something cute and funny to share? Join in at Special Exposure Wednesday. 

Please remember your comment love at each link you visit.

Also blogging at Three Ring Circus

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I recently heard about this cool website called OTPlan (Occupational Therapy Plan) from a member of my local ASA chapter and just had to share it with all of you.

What is OTPlan?

In their own words,

The concept is pretty simple: OTPlan is an activity idea and treatment plan search engine. The site matches the skills you want to work on, with the materials you have, to a detailed treatment activity that will help you strengthen certain skills. Each activity details the purpose, materials needed, process, rating for the activity, and comments by people just like you.

When you first go to the site, you have the option to start choose the skill you want to work on, the materials you want to use, or view the entire list of ideas. There is also a search box to go straight to what you are looking for.

I chose the Finger Strength skill and then selected Beads as my material. This gave me a list of several activities, including a neat one called Feed the Ball, where you cut a slit in a tennis ball and then have the child squeeze the ball with one hand to hold the slit open and pick up beads, beans or coins and put them in the ball with the other hand.

Another great feature of this website is the community involvement. You can rate each activity as well as leave comments for them, and you can even suggest your own activities to be added to the site. All submissions are reviewed by a registered and licensed Occupational Therapist to make sure they are appropriate before being added.

Check it out and let me know what great activities you find!

As the host of Try This Tuesday, Trish shares some of the solutions she has found to make life easier. She blogs at Another Piece of the Puzzle or Autism Interrupted.

We spent this weekend with friends who have three girls, ages three, five and seven. When Max was little, it was hard for me to spend time with friends and their kids—I was always comparing him to them, which inevitably made me feel bummed out.

I don't do that anymore, but lately I've been grappling with another issue: how to make sure Max is included when other kids play. These days, he really wants to join the gang. Only other kids don't always feel the same. Like this weekend, all of a sudden he started shouting and making swatting motions at the other kids. "He's just playing monster!" I said. Only they weren't into it. My friend encouraged her kids to play with Max, but as you know, you can't really force it.

How have you handled this?

Ellen blogs daily 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…

My eldest isn't really a huge fan of Disney Pixar's Cars movie — she's more of a Disney Princess kind of girl.

Be that as it may, a few weeks ago I found her happily doodling Cars characters.

Why? Because her little brother absolutely adores all things Cars and a few weeks ago, he was sick.

So she pulled out her crayon box, perched herself next to him on the couch and spent a couple of hours creating crayon masterpieces of his every whim.

The one above is of Lightning McQueen.

Next we have Lightning McQueen being hauled by Mac…

And then Miss Sally…

And Chick Hicks…

And finally we have, Sheriff.

You know those days when none of the laundry is done, the house is a wreck, the kids are bickering and you're second guessing your parenting qualifications?

Moments like this totally make up for them!

(And I think it's pretty cute that her cars tend to look suspiciously like turtles…)

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

Note: This is a compensated (Parker received his Sand and Water Transportation Station for free) review and giveaway from Step2.

It was a warm summer's morning. Parker had been signing "outside" since he woke up, hours before.

Finally, after the medications, the morning therapies, bath time, trach change and breakfast, it was time to go outside.

When you are a medically fragile kid with special needs your whole world becomes the area within your backyard fence.

And it is your Mom's job to try and provide as many typical experiences as possible.

Despite all the cords, tubing and bags and bottles that trail after you each step of the way.

Because typical is often found in the eye of the beholder.

On this most magical of mornings, Parker stepped out into his world to discover the Sand and Water Transportation Station sent to him by Step2 toys.

We set Parker's table up with rice and water. Because sand and trachs make this Mama even more nervous than usual. But the beauty is that you can use anything in this toy made by Step2.

Birdseed
Different colors of water.
Jello
Clear water with different colors of ice cubes.
Popcorn
Dried beans and lentils.

Only your imagination limits you and your child's experience with this toy.

And may I just say, Parker luuuurved this toy. Thank you, Step2

He delighted in it.

He engaged with this toy. Which made his Mama's heart sing.

And now the good folks over at Step2 would like to offer YOU a chance to win a Sand and Water Transportation Station.

Entering is easy. Simply visit Step2 toys and then come back and let me know what other toys interest you. Don't just cheat off of the comments of others…..ahem…..go to the site and look around for yourself.

Easy no? And weren't there some great toys to discover?

Other ways to win:Want to earn an extra entries?

1. Follow us on Twitter. We are 5MinSpecNeeds

2. Tweet this giveaway @5MinSpecNeeds

3. And while you're at it, how about a little Shout Out for Step2? A company that understands the value of advertising directly to parents of children with special needs. Just leave your lurve in the comments section.

This contest will run through Friday, July 10th.

Offer available in the U.S. AND Cananda!

Please be sure to read our Terms and Conditions.

You can also find Tammy and Parker hanging out at their other blog, Praying for Parker and on Twitter where they are known as ParkerMama.

Last week, I posted some photos of Esther-Faith "dancing" with her Daddy. She wasn't wearing her orthotics. One of my blog readers left this question in the comments section, "She's not supposed to 'be able' to do that right?"

No, she's not. I wish I would have kept a list of all the things my heart feared she wouldn't be able to do. All the things I heard. All the "worst case scenarios" we were told. All the "nevers" we feared would be true. And all the surprises she has given us by doing those very things. I really wish I had that list. Because look at her. She sings. She dances. She plays. She is sassy. And she is gentle. She crawls. She walks. She even runs.

Last night, she played soccer with Isaac.

I wish I had that list so I could cross things off of it.

Those photos of Esther-Faith and Tim are some of my favorites. Esther-Faith crawled up to her daddy and asked, "Do you want to dance?" She does this a lot. To me. To Isaac. But when she does it to her Daddy, something tugs at my heart. A nostalgic twinge.

At my wedding nearly 11 years ago, I walked up to my very conservative father and asked him to dance. It wasn't the first time we had danced. Growing up, Dad used to put records on the record player, and we would dance. Ride of the Valkyries. Arthur Fiedler and The Boston Pops. Alabama.

When I was really small, I used to stand on his feet. When I got older, he tolerated my rap music and sometimes even bopped his head trying to understand.

But we danced.

When I asked him to dance at my wedding, I honestly expected him to turn me down. But he surprised me by taking me in his arms-like I was five again-and whispering that he would LOVE to dance with me. My wedding was maybe the first time I had ever seen my dad dance in public. And next to being dipped in the pouring rain by my new husband, it is one of my most favorite memories of that day. He gently twirled me around the dance floor never letting go. Just like we were in the big living room with the painted floor at our old house in Leetonia.

Only I was wearing a long, white dress. And he was wearing a dark suit.

And I was someone else's Mrs.

When we received Esther-Faith's diagnosis, we didn't know if she was going to be a boy or a girl. We thought not knowing was one of the last "great surprises" in life. So, we waited. The boys were convinced she was a girl. Because they had prayed for a sister. When I sat in those rooms wearing that orange corduroy shirt listening to a neurosurgeon and a developmental pediatrician and a social worker explain what would be wrong with my baby, I was so overwhelmed that I wished I didn't believe in "great surprises."

Because that diagnosis was a "great" surprise.

But the day she was born. The day she decided to be born. The day she didn't wait for her scheduled c-section. THAT day, I thought about my wedding and that dance with my dad. Just after my doctor, performing an emergency c-section, pulled my baby out of my uterus, Tim, with a smile bigger than I had ever seen on his face, leaned close to me and said, "We have a daughter."

Suddenly, I believed in "great surprises," again.

And all of those warnings and diagnosis and fears flooded my body and I started to shake. Not cry. Shake. With fear. And cold. And probably from the four narcotics they had to give me just to numb my body. But I shook. And I was immediately and desperately sad. For my husband. For my Tim.

What if he never gets to dance with his daughter?

So when she crawls up to him, laces her fingers through his, and they dance, it gets me every time. Every single time. Because Tim smiles at her like he did at me the day she was born, and he says, "I would LOVE to dance with you."

And they dance.