Thursday, December 10, 2015

Two Of A Kind!

In 2012, when our family lived in Maryland, I wrote a post on June 1, 2012 about then 22.5 month-old Orion titled, "There's No One Like Orion" and talked about "Orion Syndrome".

Now I can say there's two of a kind!

There are pictures of both Orion and Clarisa here and I will tell you who is who at the end of this post.
Beautiful baby #1
(Image description: Seen from the chest up to the head, a white haired day-old infant, eyes shut laying atop a textured blanket.)

Beautiful baby #2
(Image description: Seen from the chest up to the head, a white haired infant, eyes shut, a pink binky lays nearby.
In Wisconsin on June 30, 2015, a Deaf couple, Justin and Rachel, who we knew from our days in Maryland, gave birth to their fourth child.  Their new daughter, Clarisa Delilah Vollmar, was born with amazing white hair and her eyes were yet to be seen.  Our mutual friends were immediately busy tagging the adults of both our families on Facebook.  What are the odds of two families, each with a DeafBlind child with white hair born years apart in different geographic locations, knowing each other prior to the arrival of Clarisa?  The Vollmar family knew of Orion when he was born, too! Our older kids played together occasionally before the Vollmar Family moved to the midwest when Orion was around a year old.  Who knew the circumstances of Clarisa's birth would reconnect us?

After my first reaction of shock learning that there was another kid exactly like Orion in Clarisa, I was so happy for Clarisa and her family.  My joy was flavored with knowledge of the challenges that lay ahead of them as our family started traveling on our path with Orion almost 5 years before (Orion turned 5 on July 19th, 2015).

Photo #3: A swaddled baby burrito!
(Image description: A baby's head is covered in a fashionable pink and white hospital cap, is sticking out top of the "papoose" wrap, along with a hand peeking out.)
Separately, I showed the picture Clarisa's parents posted of her on Facebook to Orion's big siblings Skyler and Anastasia. When asked who that picture was of, both replied, "Orion."  They were so surprised and amazed, too.  Someone like Orion?!

Even to us parents, it's remarkable how similar and gorgeous our littlest ones are.


Back in 2012 we learned from our NIH National Eye Institute visits in Bethesda, Maryland which genes had a part in Orion being deafblind.  From that, we learned how it was that the rest of us were deaf, except for our hearing daughter. I will share more in a separate post.  Clarisa's genetic story may or may not be similar, but looking at these kids and looking at both families and the fact there are Deaf siblings, the answer seems pretty simple: the same genetic dance happened for her.

Challenges and Joy

The seas of raising a DeafBlind child is not easy, our two families will have a lot in common, yes, and our children will guide us on their own journeys that may look very different, or actually parallel in experience. Every DeafBlind child, even with similar etiologies who could pass as cousins or even siblings as seen here, is different!

Photo #4: Another swaddled baby burrito!
(Image description:  baby's head, covered in a fashionable pink and white hospital cap, is sticking out top of the blanket wrap, laying content in the newborn warmer.
Talk about the discovery of the final frontier!  Gathering information* without our distance senses (sight/hearing)!  Exploring the dark depths of our oceans, mysteries of the human mind, putting ourselves in the perspective of our young children, as well as learning of strategies, information and experiences of the parents, friends, role models and professionals who "sailed the seas" before us.  We have first row seats experiencing the little, yet burning magnesium bright, accomplishments of our DeafBlind children.

*Gathering information: The best in-a-nutshell description of deaf blindness I've seen is that it's an information-gathering disability.

Identities in the photos:
#1: Orion
#2: Clarisa
#3: Clarisa
#4: Orion

Clarisa's dad, Justin, put these photos together side by side to see if friends could tell the two kids apart.

(Image description: Text on top reads, "Can you guess which is Clarisa or Orion?" Two head shots of two separate newborns wearing blue/white/pink striped hospital caps. The one on the left wrapped little fingers around an adult's thumb; the one on the right is being kissed on the forehead by a female.)

Orion is on the left, Clarisa is on the right.

Monday, December 7, 2015

December 2015: Guest Moderating at Communication Matrix Community

UPDATE: I added links below to the posts I wrote exclusively for the Communication Matrix community through the end of December 2015. I also enjoyed interacting with community members via comments.  Although I had my two cents to offer, I came away learning so much from our community.

Hi friends and family! I've been invited to guest moderate at Communication Matrix Community, contributing from the viewpoint of a parent with a DeafBlind child. Also, the Communication Matrix is an awesome tool to see where a child is at, communication wise. Come check the posts and the Matrix out. No need for choosing a blue or red pill, it's all about communication!

Please follow this link to read my first post there: Any Communication is still Communication   This post covers what I believe as a Deaf mother of Deaf, Hearing and DeafBlind children about our communication for our children and others.

Father and Son Enjoy a Finger-Tapping Conversation
Turn taking is a communication skill. Not only that, they truly connected with one another and enjoyed it. Vocabulary shouldn't be the only goal you have...

Your Flyswatter vs. The Good Fairy
This darned fairy gets in the way of concept development and makes us totally miss the delicious opportunities for expanding on an activity or object.

Mommy Loves the Communication Matrix
...It helps us recognize and explain to our community about our children’s ‘voices’ or ‘touch”, that many people probably never realized or appreciated were meaningful communication.

Video: Talking and Eating (with Orion)
This post leads to a video where I entice my DeafBlind 5 year-old son Orion to feel my signs.

Photo description: From left to right in this black and white image focusing only on the heads of three siblings: big brother Skyler, little brother Orion and big sister Anastasia.  Skyler and Anastasia's heads are turned toward Orion, kissing his cheeks.
Photo credit: Clare Cassidy Photography, September 2014.

Perseverence + Consistency= Milestone!

Two exciting things happened Friday night (12/4/2015): First, Orion signed “MOM” and “DAD”; second, Nyle DiMarco won America’s Next Top Model’s final season (ANTM’s 22nd season). 

Celebrating Nyle DiMarco

Nyle is Deaf and uses ASL. Have you seen Nyle’s modeling photos? Go Google him up! When Tyra revealed Nyle as the winner of ANTM's final season, we erupted in cheers.  My Facebook community hash-tagged #NyleDiMarco and uploaded many pictures and videos of jubilant TV viewers from coast to coast.
Some of us even gathered around to watch again the announcement of the winner.
(Photo description: five adults, one is standing and the rest are seated in front of the TV displaying the image of Nyle DiMarco and his mother, Donna. A huge Christmas tree is displayed to the left of the TV.)

ANTM's Hostess Tyra Banks said it well,

"So, Nyle, you won America's Next Top Model because you are an amazing model. You have it. You just so happen to be Deaf.” 
Our children and their friends entertained us by holding their own runway walk show with our Halloween head-gear and dress-up costumes.  Nyle had inspired Deaf and KODA kids! (KODA means Kids Of Deaf Adults.)

Orion was with us the whole time. He could sense the excitement in the air, was in a playful, happy mood.

Now, regarding, Orion, ​I've got to get (or someone could invest in) one of those body cameras or GoPro thingamajigs, or have a video crew following him around. For now, those brief but awesome moments will have to be for Orion, myself and anyone else who witnesses it.

Orion signed words we've waiting so long for

Earlier in the day of Nyle's win, for the first time ever, Orion signed an approximation of "MOM" as I was holding him! First he signed it on himself, thumb out and touching his chin and his fingers were claw-like (standard sign would be outstretched fingers, but I don't care- it's what he MEANT!) then he touched my chin with his thumb. For five years we signed "MOM" on his chin as a touch cue and in the last couple of years we signed it on ourselves with him riding our hands and on him (pairing touch cue and tactile sign language). Anyway back to the moment, Orion then went on to sign an approximation of "DAD". He was grinning from ear to ear! He knew he did something awesome, I could tell by his intense smile! I handed Orion over to Dad and we reinforced Orion by signing Dad via tactile ASL and touch cue.

Did I see that? Did he really sign that? Did he really mean it? There wasn't a camera around. Even if there were, we would probably lose the moment while fumbling to turn the camera on. My husband Thomas and our friend Teri (first to arrive for the ANTM finale party) saw him sign, too, and confirmed it.

It did not happen overnight, it took five-plus years…

Photo description: Orion, our snowy-haired son holding a wooden toy, leans his head lovingly on Mom's left wrist. Mom's hands appear from out of frame and behind Orion, and are resting on his upper chest, embracing him.
Photo credit: Clare Cassidy Photography, September 2014.


Consistency is important. Not just in the routines and labeling but in the fact every member of your child’s team, at home and school, uses the same signs. The same goes for symbols and cues.  I encourage parents to find out what signs are used in school with their child and the IEP team needs to stay on top of what signs are used at home. Also important is using the same, standardized signs, cues, and/or symbols, etc. during activities, with the object or person. This way it is more concrete, rather than a distant, abstract notion plucked from outer space.  We want to encourage concept development, that way, the labels are able to stick in the child's mind! If you have the opportunity to, go ahead and repeat the sign a couple more times as they are also opportunities for him/her, too, to receive this information.

"Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before."
~ Jacob Riis
Now that Orion has signed "MOM" and "DAD", we will not stop doing what we've done all this time because we have also seen him sign words before and never to sign them again.  We did think maybe he signed them when no one was looking at him, either we were doing something else or it was at night while everyone was sleeping and he was partying.  We would not be able to reinforce, respond, affirm his efforts to communicate.  Because of that, we will not stop.

A hundred and one blows or five years, whatever the length may be, we need to stay the Orion course!
Artist theme going on here!
I pump-spray painted Orion's t-shirt, a formerly plain white t-shirt covered in black and blue paint with the distinctive pattern of the seven brightest stars of the Orion constellation on his chest.  Orion is also sporting a light-teal colored bandana on his forehead.  This bandana-wearing is a De'VIA artist's trademark, who also happens to have white hair, too. Can you guess which artist this is?