Getting Footage with His Feet

Orion finished Extended School Year (ESY) last Friday and isn't due to return to school until it starts for the 2015-2016 school year on August 24th.

He slept through our Mayfield Park peacock visit earlier this week.  The plump, poshly plumed peacocks were very close to His Highness as he snoozed in his special stroller.

Orion, in the stroller, as Anastasia, Skyler and Dad looked at the peacocks.

Not only this week, but in the last couple months, he has been interested in getting up and walking with assistance to certain destinations: Mom and Dad's bed, the bathtub, and his highchair.  Several times this week he walked from his playroom (it's his bedroom but he still sleeps with us) all the way to his highchair in the kitchen.  The same thing happened from the office in the front of the house to the kitchen in the back of the house.  I wish he'd like to use the walker we borrowed for him.  Our backs are saying, "Ow!" as we hunch over or squat to support Orion at the armpits.  I even walk on my knees to save my back. Often he prefers to be held, all 37 pounds of him.  I've joined a membership program at a nearby massage establishment.  It may still not be enough.

As he is walking, he is trailing the wall, tables, the couch with his hand and when he crosses empty space he has his arms extended in front of him with his fingers outstretched.  (Do I hear our O&M people hooting and hollering?!)

Now, how did we know to go to the kitchen, bed or bathtub?  We didn't.  We followed his footsteps. We admire his knowledge of the territory, we admire that he knows what he wants and where to go for it.  A foot in front of the other...  He's getting plenty of footage in! One day Orion will be able to cover a mile and reach beyond, just like his I Run 4 buddy Greg!

Skyler and Orion relaxed on the plush backyard lawn in the evening shade.

Orion's Pool Time (VIDEO)

Orion is currently in a 4-week ESY (Extended School Year) at TSD.  There's been a "change of guard" with a new teacher who's been working with him during ESY.  We are blessed she will continue on to be his teacher for the upcoming academic year.  Orion will be in KINDERGARTEN!  Be still, my heart!

I'm sharing a video of Orion transition to the pool during the first week of ESY (also the first week with his new teacher).  There is always an adult with Orion, from getting on the school bus in front of our house in the mornings all the way to getting off the bus at home.


In this video, Orion transitions from the classroom to the school pool where he gets in the water with his new teacher who is coached by Orion's interveners.  You will see hand-under-hand technique and "wait time" (allows time for feeling, processing and responding).

To see other Orion videos, you're welcome to visit the "Video" tab which is between the top of this post and the bottom of the blog header.

That's Orion's Seat!

Orion is not actively expressing himself using sign language but does sign something once in a while, the top three most used Orion-expressed signs are bread, milk,  and more.  We are committed to exposing him to tactile ASL and still using touch cues, object cues and tactile symbols during his routines at school and at home.

I followed behind Orion and his teacher into the TSD Pre-School lunch room to observe them using tactile symbols and tactile sign language during lunch time with the now and finish boxes.  I saw some activity amongst the 4 little kids at one table and later learned that one little guy told one little girl in cute little sign language, "That's Orion's seat!  You need to move."  I did see Orion walk with assistance behind one seated boy to settle down next to him in his designated seat.  It was bizarre and heart-warming to see Orion among kids of similar size, having walked and sat down in a typical classroom seat and eating with his hands just like the other kids.  Orion doesn't try to interact with the other kids but I appreciated the kids acknowledging him.

A boy sitting across the table from Orion turned around to me and signed, "ORION SWIPES [signs swipe off side of head]."  (Orion knocks his cochlear implant off.)  I replied confirming his statement, "YES, ORION TEND SWIPE." (Orion tends to knock his cochlear implant off.)

Orion, mid-chew, holds a sandwich in his right hand while his teacher holds his attached CI processor off his left shoulder.

Orion ate at Orion-pace and the other Pre-Schoolers were settling down for nap while Orion was almost finished with his lunch.  The lights were turned off.  Orion was unaffected and the adults working with him, including myself, transitioned to moving around in darkness.

I mused that totally DeafBlind people probably chuckle at sighted people when the power goes out.   I know who to seek in these situations!

Making Waves

Zipping south on Mopac in our van, Orion checked out the breeze.

Orion felt the pleasant, warm wind outside the van with his hand turning at the wrist just outside the window, fingers outstretched like five dogs checking the outdoors.  At four and a half years old, his arm was barely long enough for him to do this! As big brother Skyler watched this, he saw a guy in a vehicle in the next lane wave back.  It was a simple, very sweet, fleeting moment.

I loved this.  This guy didn’t know the kid was blind.  Look at the effect a DeafBlind kid has around him!

One of my favorite quotes come to mind: “A candle loses nothing by lighting another candle.”

The same goes for a smile and even a friendly hand wave.

My Four Year-Old, Knives and Marshmallows

Catchy headline, eh? What were you thinking?  Knife juggling? Knife swallowing?  Napping with knives? Did something messy happen with a knife? Something about the Stay-Puft Marshmallow Man from The Ghostbusters movie?  I invite you to read on...

Orion chills with Mom/Heather on the grass.

I had a moment of clarity explaining how Orion learns as a totally DeafBlind child, while I was cutting an applepear... or was it pearapple? Either way, it was delicious! At dinnertime during my daughter's slumber party last night, Orion crawled into my lap from the chair next to me and leaned against me while I multi-tasked cutting the papplear. I was chatting with my mother-in-law.  (We were signing, my MIL is Deaf, too.)  She offered to help me cut the fruit. I might've as well been pulling a wood piece out of a wobbly Jenga structure. What a catch-22!

Yes, her help certainly would make it easier on me, however, Orion would think fruit just pops up as ready-to-eat slices on a plate in front of him.

Orion picks up information through touch via other parts of his body about what's going on in his environment. Even as he sits calmly on my lap, he's feeling my arms moving purposely as I sign.  When he decides to follow my arms to the appearple, he can feel the top of the knife as I push it down. I love it when Orion accepts my invitation for his hands to ride on top of my hands (a.k.a. "Hand-Under-Hand" as I work.  It's even better when he decides to do it himself.

Oh, yes, I DO worry about cutting him!!  I would avoid letting a sighted 4 year-old do the exact same thing, it is not safe.  A sighted 4 year-old would see me cutting the fruit and learn the function of the knife. In Orion's case, he's totally deafblind and learns mainly through his sense of touch.  By letting him touch the knife he almost understands the knife's function and that the fruit is whole at first before I peel, which is safer with a peeler, and then slice it.

I fully agree and understand when I hear at workshops that we need to let our kids fall.  This applies to all kids, let's call it universal learning!  Now, we definitely will intervene if it may cause serious injury, for example, top of the stairs, or the unprotected edge of a drop and we suspect our child or individual doesn't know what's ahead.

In fact, Orion started to get himself up into a sitting position independently the day after no one was there to catch him as he leaned back from practicing sitting upright for longer periods of time.

Hey, there's hay on your hands and knees, Orion.

And now for the messy.  Tonight, Orion was brought out to join us around our fire pit for roasted marshmallows.  He felt the empty prongs of the metal roasting stick, ate a marshmallow straight out of the bag and felt me put one on the stick and it disappeared from his touch.  I had one already slow-roasting (I don't like my marshmallows burnt!) so I brought it to Orion's hands where he felt the warm stick toward the roasted mallow.  He took a few bites and decided he didn't want the sticky marshmallow and pushed it away. He ended up with a sticky mess on his hands and around his mouth BUT he was checking out how sticky his hands were, then his knees, then his feet, then the grass...  He looked like the son of scarecrow reaching puberty with grass on his feet, knees hands and a little on his cheek.  It was messy, yep, but he was experiencing and learning more about different textures under the pleasant smell of a small campfire with his mom.

I figure with the danger and the mess, Orion will know that fruits can be peeled and cut.  He will know s'mores, the different states of matter marshmallows and the contentment in hanging outside with family by the fire pit.  Because Orion's memories will be through touch, smell, taste, experience and emotion, I hope he will also enjoy connecting the senses of his family whenever he smells a campfire.

As for the the origin of the peapprle, we will create direct learning opportunities for Orion to connect the fruit to the twig, and the twig was on the branch, and the branch was on the... by finding a tree with fruit in it and have him pick it off.  We will also need to plant a seed in the dirt, water it, feel it sprout out of the soil, then visit it often as it grows.

Orion will will one day 100% understand knives, after his first knife accident; he will 100% understand why something is dangerous and hurts. *shudder*  These are the learning experiences I will not create, I will do all I can to allow him to explore and learn enough and not get hurt.

I can see it in Orion's face, he is happier and his life is so much richer with each and every opportunity for him to reach out and experience whatever situation or setting he is in.  We want to show Orion, this is what Life has to offer and let him seize it, Orion-style.

Orion and the rest of us enjoyed the pearapplepearwhateverbecauseitwassogood!

Skyler and Anastasia discuss the game of tag.

Skyler ran around in the night with a light under his shirt like Iron Man, with holiday lights in the background.

Sticky boy next to the fire pit.

Orion and the Balusters (VIDEO)

Sure, Orion's an exciting kid... at the caliber of a Seahawks surprise come-from-behind victory. Tonight, he pulled himself up to standing using the upstairs railing for the kids and I to see!

In this 2 minute video, Orion is seen crouching, flat on his feet, practically sitting on his bottom as well and really checking out the straight and twisted metal balusters with his hands.  Fast forward a couple minutes, he pulls himself up using the balusters; takes a couple side-steps to our delight; to our fright he also tries to climb over!  After around 4 to 5 minutes upright, he lowers himself to sit and lay down.  Good job, Orion!

Now... does anybody out there have a good suggestion how to keep their kids from climbing over the 2nd story railing?  Forget about saying, "No".  We need something physically in place.  Thanks!
 

Where's Orion? (Photos)

An Orion adventure today: I was tinkering around in the kitchen and I noticed Orion wasn't in the TV room. "Where's Orion?!" Not in the kitchen nook, not in the hallway, so I walked into the master bedroom where Thomas was napping. There he was! Orion was practically on his dad, trying to put his feet up the back of his shirt! The photo shown here was taken on a different day but was probably what Orion did to get up on the bed. Way to go, Orion!!

Image Description:
A "film strip" format of a series
of photos showing Orion climbing
up the side of a high bed.

Encouraging Communication in Tactile Sign Language

Orion's right hand is on top of Anastasia's right hand as she holds him.  Orion is between Skyler and Anastasia who are shown from their smiles and below.  In Orion's left hand is a family-treasured wood toy giraffe with wheels.
Photo by Clare Cassidy, September 28, 2014.

We had a great tactile moment last night!  Orion was sitting up and I was laying on my side on the floor.  He lightly rested his hands on mine for what felt like a good 15-20 minutes.  I kept signing, “YOU ORION, ME MOM” and he followed my slow movements, smiling… he was definitely listening.  I didn't want to sign fast, causing him to lose contact of my hands while tactile signing. It was an intense, joyful moment seeing this progress between the two of us.  I hope for more at home and in school.

Musing an inside joke while eating.
November 24, 2014

I kid you not, the greatest moments from Orion happen when the camera is not around.  I would love to share pictures of these hand-to-hand moments!

What feels like a few months ago, Thomas and I noticed that Orion was not trying to use his hands to communicate the way we saw he did before.  We wondered if it were because Orion didn't get feedback or confirmation that his attempts to communicate meant something- such as possibly signing at night while we were asleep.  Another possibility is that we knew Orion well and gave him what he wanted or needed before he could ask for them.  Orion would also have periods of intense fussiness where he didn't feel well.  What's frustrating for us is that we don't know what's bothering him.  Orion is usually going to the doctor for one more reason than a typical kid- for the doctor to check him out and tell us what he/she sees is the problem if there is one to be found.  For example, last week, his dentist told us he had a new molar and another one butting it's way through Orion's gums.  We probably wouldn't have figured that out on our own. 

We remembered several important things we needed to practice with Orion: 

1. Wait, wait, and wait for him to sign or gesture even if we know (or think we know) what it is going to be about; 
2. Using tactile ASL or touch cues (a.k.a. signs on his body) to label as many actions or touched objects as we can, slowly, repeatedly, at least 2 to 3 times depending on how often the object comes into touch; and 
3. Make sure to pause, creating opportunities for him to reply or explore the situation at his own pace.

Orion does not have any usable vision since birth, thus the importance for him to touch, explore, observe, process and apply whatever he touches and experiences.

We ramped up our efforts around a month ago.  We've seen the return of "FOOD or APPLE" during the last couple weeks; we started seeing "BREAD" again a few days ago and then last night that new, beautiful moment occurred!  

"HURT" is another sign we continue to work on, being careful to show it clearly different from "MORE".  The motions of both hands coming together are similar but use of fingers are different.  When we sign on his body, it will feel the same and that is why we are working on Orion putting his hands on ours, knowing he will feel the difference between the 1-fingered "HURT" sign and the all-digits-in "MORE" sign.

Introducing "HURT" is abstract to him, we are not creating opportunities for labeling that!  When he has an owie he's touching or if we saw him bump his head, we sign "HURT".  One day he will be able to tell us himself where something is bothering him.  I know he'll agree that the less doctor visits, the better.

Back to the work of love we go!

Two brothers, Orion and Skyler, bask in the sunshine at home.
November 25, 2014

Who Do You Run For?

I took these pictures to share with Orion's I Run 4 buddy, Greg, how it was for him opening his mail package.  What a treat!  Not only Greg sent Orion a belt buckle cover from his latest 50 mile run, he included fine handmade cards from the students in his classroom up yonder in the Chicago area.

Have you ever heard of the "I Run 4" program?  The idea is for runners to run for children who cannot run for whatever reason.  Thanks to my friend C, whose son C, has a running buddy across The Pond, threw in my direction the idea of signing Orion up for this.  Runners can sign up to be matched with their buddy and vice versa.  I signed up Orion and we got Greg!  He's an awesome (and humble) running machine often cranking out double digit miles during his runs.  Don't let him tell you that he's slow, no, no. The fact he is consistent and determined is an inspiration for us with Orion.  (He is still fast, anyway.)  Motivating us to be consistent with routines and communication with Orion.

Orion does the same for Greg, inspiration and motivation to keep on runnin'.

A while back, Greg ran a 50 mile race, finishing it under 9 hours.  He was given an extra race belt buckle cover after sharing about his little buddy Orion.

With the package we just got from Greg, we feel that not only we gained an awesome running buddy in Greg, we also gained a classroom of little buddies cheering for our little wizard.  

I Run 4 communities can also be found via Twitter, Instagram and Facebook.  You can sign up to run for a little buddy.  If your kid has special needs, sign him/her up for a running buddy- inspiration truly is a 2-way street here!

Orion's first pick out of the package from Running Buddy Greg.

Orion checked out the packaging for the belt buckle.
It was a favorite to touch, because of the triangle cut-out on the other side.

Bite test: I want to do this like a Deaflympic medalist!

Check out the bling!

Orion's big sibs, Anastasia and Skyler, read the cards from the students in Greg's classroom.
Anastasia deducted from the lovely illustration on this card that this student loved horses.

Orion, big sibs, and his fan mail!
A big Thank You to Mr. A and his class from us in Texas!

And now for a Public Service Announcement for all you kids out there, especially Mr. A's class: 

Reading Rocks!

Orion got a new braille picture book from Dolly Parton's Imagination Library.  American Printing House for the Blind works with this program to send out braille books periodically for blind children to enjoy from birth to 5 years of age.  Orion is 4.  He isn't reading braille yet but we're learning some anyway so we may one day enjoy reading with Orion.  Orion enjoys the feel of the braille bumps on the pages.  He knows the physical characteristics of books, definitely, but not the stories within the covers just yet.

Reading the latest Dolly Parton Imagination Library book arrival which happens to already be a favorite: "The Mine-O-Saur" by Sudipta Bardhan-Quallen.