Acceptance

This photo is from Roa's last day of Conductive Education. Yes, I wrote last day. It makes me so sad to say but we are discontinuing this part of Roa's weekly routine. Paige, Roa's PCA, resigned. She was PCA number 9 in our life. We are tired of training. Tired of interviewing, asking of they can commit for one year or so, and then receiving a resignation notice. Usually the reason is the work is too much. A few moved on to real world jobs. We hire college girls because they like the experience and work for $10 per hour. If we would go through and agency, we would pay $13-20 per hour. This is an out of pocket cost to us. Plus gas to get to The Plus Center. Plus the cost of the CE session itself.
Everytime we get a new PCA, I have to train her in our home and Ors has to train her at the center. Ors is done training our people. We would have to pay for his staff to assist Roa and that cost would add up fast with gas and session fee.
So, we chose sadly to give up the Conductive session twice a week.
It feels like another door closed. It feels like another hope of mobility shredded. Depressing, yet reality.

We are in the process of trying power chairs and looking at vehicles. Roa enjoys the joystick and is building confidence at school maneuvering around his friends. We are starting to accept that this will be Roa's main mode of movement. We are working with the ARC of MN to apply for TEFRA- the form of MA we pay the county to be on. The middle class curse.

We will continue with therapies- OT, PT, Speech that our insurance covers plus squeeze in horseback riding, aquatics time, and ABM sessions as funds allow. We put a large portion of money given through donations to the upcoming Masguatova Method Camp in July. Praying this method of reflex integration helps Roa find movement on the floor with more ease.
We are discouraged. Grief and acceptance is setting in. But we still try to find the light.
Thank you to the wonderful donations from loving family and friends.
Thank you to my dear friend Karl Wallin for planning and organizing a fundraising concert on May 11 at the Trempealeau Hotel in Wisconsin. The extra donations will help us continue with adaptations to make Roa's life and ours a bit easier.
Most of all, thank you to Christine, Aunt Vick, Lori, grandpa Al, and Daisy for giving Bryan and I respite. Every time you take care of Roa (and Gunnar) so that we can get away for a breather, clean the house, etc.,you are giving us a true gift! You all aid without question and we love you for it.
I recently had a nurse at one of our numerous appointments say, "We never get time away from our kids either". She had typical developing children, age 2 and 4. I held my tongue but wanted to say, " until you cannot leave a room without your non-verbal , non-mobile child crying out to you..... Until you have to spoon feed every bite into that child's mouth.... Until you have to place that child in a sitting position to then, hand over hand play,... Until that time..... You can keep you comment to yourself."

Thank you to those of you who get it.

The View From Here

Bryan is in Kansas for work.  Just a one night, two day trip, but it leaves me running and my boys having to enterain themselves a bit more.  Not a big deal, I manage with the help of family and friends to come and break the day up on these frigid, no outside play days.

This morning as I scurried around the kitchen, getting breakfast dishes cleaned up and sneaking in a few sips of coffee, I glanced into the family room and had that guilty, sad feeling rush over me.
Gunnar was at play with his Duplos, Ipad, and Baby Jaguar.  Up and down. In and out of the room he moved, busy at play.
Roa, on the other hand, was lying on the floor, tugging on the strings of his helium "Get Well Soon" balloons, still alive from his hospital stay.
Poor Roa, I thought.  The poor kid is stuck doing the same things over and over when we are not there to help him play.

But then, I thought for a moment,... and slipped quietly into the room to join him on the rug. 
The balloons were floating above us, bobbing up and down with each pull on the ribbon.  The morning sun was reflecting light from the balloons onto the white, textured ceiling.  Millions of little light beams were dancing in rainbow hues across the ceiling.  Red, yellow, green, blue... I could see them all.
As I looked to my right, I could also see the reflection of the balloons in the fireplace glass, which lit up with the bouncing balloons.  This of course did not go unnoticed by my observant little boy, as Roa looked from the ceiling, to the balloons, to the fireplace.
And to further add to my amazing moment of spying on play, I noticed that Roa wasn't just moving the balloons, spastically with a body that just did it's own thing.
Roa was purposely twitching the ribbon of the balloons to make the colors move, blend or freeze.
Play with Purpose.
What parents and Early Educators take pride in.
Roa was doing just that.

So next time you glance at a "special child",  whether they are laughing to themselves, repetitively lining up or banging on toys, or simply watching a toy spin or move.  Do not be quick to pity or judge. 
They own their personal play.

From the view I took today,  Roa was blooming where he was planted.

Potty watch working!

So we purchased an Angry Birds watch for Roa to wear to tell us when it is potty time. First day, I told him all about it- if you gotta go look at your watch, bite it, whatever! He laughed, bit his watch, I put him on the potty and he WENT! This kid is so smart! Proud Mama moment!

Joystick overjoyed !

I found this toy at Lakeshore learning. What an awesome way to practice joystick skills for the powerchair we will be getting! Roa is addicted! So neat!

Flu Blues

Roa is in the hospital. Getting an IV and meds after a few days of the flu. That gag reflex kicks in and nothing stays down! Prayers for a quick recovery!

Famous

Look who made the White Bear Lake School brochure?

Therapy time

At Functional Kids