Rare Diseases — 5 Minutes for Special Needs

Rare Diseases


A few years ago, I fell in love with Signing Time. Jack was struggling to do much more than scream and I was increasingly frustrated. In a last ditch effort, I bought some DVDs and prayed that he would communicate with me. Slowly, he began to sign (things like more and done) and I felt like maybe I could communicate with him.

That’s when I decided that I was going to stalk Rachel Coleman (co-Founder and general all-around awesome human being). I followed her on Twitter and began to join the weekly Signing Time chat (sadly, they’re no longer doing it–because it was SUPER fun!).

Over the years, Signing Time has become more than just a cute DVD to help my child learn how communicate with me–it’s become part of our family. For that, I am forever grateful.

So, imagine my surprise when I heard that:

A) There was a POTTY TIME DVD coming out!

B) I was going to get to review it!

Truly, this is fantastic! It’s 30 minutes of fun–with some valuable potty training lessons (My personal favorite song is “I Wash My Hands!”)!

The target audience is aged 1-5, but I figure that’s not relevant in our special situations! It’s really quite adorable. Rachel approaches potty training as such a positive thing–nothing to be worried about! The video focuses on listening to your body and doing what you need to do, when you need to do it! They speak of celebrating such amazing potty goodness—which I can appreciate (we celebrate every tiny milestone here!)!

If the DVD isn’t enough for you…the Potty Time website has numerous ways in which you can get even more support on your Potty Journey!

* There’s an app for that!

* You can purchase the Potty Watch—it’s a watch that sings and lights up to remind your child to go “try!”

* Print of this handy chart to help everyone celebrate success!

* Or…just read articles and tips for all parents.

If that’s not enough for you (or you’re a groupie like me), follow Signing Time on Twitter or Facebook—and also do the same for Potty Time! (TwitterFacebook)


But wait…there’s more!

I want YOU to have a copy to help you on your Potty Training Expedition! Leave a comment telling me why you would love this–simple, right? I will use the random generator (Jack picks a name out of a hat) to draw a number, and that person will get their very own copy of Potty Time! Yippee! Entries must be in by Wednesday, February 22, 2012 at 12 noon (my time–East coast).

Good Luck! And thank you Signing Time for enriching my life in so many beautiful ways! Love you!




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We’re at Camp – A Place I Never Thought We’d Be

S'Mores at a Campfire / Chris Dag - FlickrAmid the chaos, we’re also off to camp. Today, is our second day here – third counting check in and the wine and cheese social that was planned for the first day…that was new.

Camp is a relatively new experience for us. This is our second year, and we’re in the mountains of Colorado with Adam’s Camp. While last year was centered on constant therapy which was difficult and likely not the ‘camp’ experience J thought he was getting. This year, he’s getting nothing but adventures…and socialization.

Adventures are in the form of canoeing, hiking (woodsy walks), rock wall climbing, swimming, horseback riding and more.

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Our Role & words hurt

So I was thinking, draw 3 circles on a piece of paper.  One inside the other, so really you have 3 cirles around each other(as pictured)
The inner circle is our children, this is their culture of being a child with special needs.
The middle circle is us, the parents.  We’re not in the same circle as our kids because we’ll never fully understand what it’s like to be in that inner circle.  Even if, as parents, we have special needs.  We understand that as individuals, things have changed and are not the same for our children as it was for us in our younger days.
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My Angel

I knew that my body was giving everything to this little person growing inside me. I knew my life would never be the same; that our lives would never be the same. There were no words to express the happiness I knew my belly contained. I knew that this little being was my angel; my Guardian Angel here to help me make my life what it was to be. Nothing anyone can ever tell me will change my feeling on this. He is my angel and in his own way he teaches me, and everyone around him to take note and see what is truly important in life.

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Music at Mary’s Preschool

I have not formally introduced myself.  My name is Chaney.

I am Mary’s mom.  Mary turned 5 in October.  She loves music, horses, Dora and going outside.  Mary uses a DynaVox VMax for the majority of her communication.  She also has a trach and a g-tube.  Mary is diagnosed with Arthrogryposis, Agenesis of the Corpus Callosum, a seizure disorder and various brain abnormalities.  Overall, she is pretty comical, creative and brilliant, I’d say.

TodayI am volunteering in Mary’s classroom. (Well, that isn’t the whole truth… I can’t find a nurse to fill in for my regulars… I have to go with Mary or she can’t go to school.)  Anyhoo… Today I am bringing my guitar to her classroom and will do a music therapy session. 

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Tube Wars

When my daughter Melissa was a newborn she refused to breastfeed.  My wife Kathy tried diligently and even got help from the nursing staff.  But before this challenge could be resolved, we ended up in neonatal ICU with a metabolic crisis on our hands.

We left the hospital, taking our sickly child home.  We were scared to death.  We had learned that  her disease required “diet management”.  We were sent home with several cans of “powder” that we would measure on a gram scale, mix with water and then feed to Melissa in tiny 50cc baby bottles.  We were taught that we had to get a “target” volume of formula into her each day or she could become dehydrated and face another metabolic crisis. 

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When imitation isn’t flattering

My two year old has been in a stage of imitating everyone around her lately.  As these things go, I find it pretty adorable. 

Until she tries to imitate her six year old brother.  Not so cute anymore.

Her brother, Will, was born with a rare chromosome deletion that few kids in the world share.  There are other, more specific labels we use including severe apraxia, probable mitochondrial disorder, and the one presenting the problem here….autism.

So, when we’re driving in the car and I hear Will scripting what he sees on billboards, it’s part of the routine.  Even funny. 

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Time Discovers Truth


And Now

Before I became a mom, I did everything at high speed.  My long legs galloped through airports, trade shows, malls, corporate hallways- purposefully propelling toward my destination. I assessed people too quickly, rushed through conversations, and often missed the simple beauty of everyday life.

Fast forward years later, when my second daughter Zoe was 5- I was standing in a small social circle of busy moms lamenting about their general lack of patience. I joined in agreement, quick with my own confession.  “No, you  are so patient..” a friend argued. I have seen you with Zoe.”

Zoe was in kindergarten then, her metabolic disease, epilepsy, and other issues stabilizing enough so that she was able to begin kindergarten with a full time aide.

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Special Exposure Wednesday.

Apologies for last week.

This was us:

Earning us three days in the hospital

but this was taken yesterday:

I’d say she’s doing much better.

Got something to share?

Why don’t you join in this Special Exposure Wednesday.

Please remember your comment love at each link you visit.

Also posting at Three Ring Circus.

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Birds of a Feather: The Special Needs Lunch & More BlogHer highlights

I left my 2yo medically fragile son for five days…count ’em five days AND nights, to attend BlogHer’10 in New York City. It was business, it was pleasure, it was exhausting…you name it – I felt it.

Mostly I felt terribly guilty about going, but given the awesome opportunity I just felt I could not pass it up. I was really worried that my son would be devastated. He wasn’t. Nothing went wrong, it was an uneventful week without me. *Sigh* I mean it might have been nice if he had cried..ya know, just a little. (My ego was only slightly bruised.)

This kid is tough as nails.

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