Families of DeafBlind Children for the Cogswell-Macy Act (VIDEO)

This is a video project I wanted to do to show who are behind each deaf-blind child: their families!  Who also makes a difference in deaf-blind children accessing their education? Trained teachers of the deaf-blind and interveners!  

Families of deaf-blind children were so gracious sharing their family and school pictures with me for this project. I was deeply touched and happy to put together this video and get it out there.  Orion's big sister, Anastasia, narrated this video!

The video was released on March 2, 2016, the same day 100 people were on Capitol Hill visiting our US Representatives and Senators to talk about this important bill that needs to happen.

Description of the narration/subtitle/images is underneath the video at it's main location in YouTube.

Boss the Dog

We still have hope that specially trained service dogs will be in Orion's (and our family's) future.  Orion tends to push pets away but during the first week of December 2015, he had a brief but amazing and funny interaction with a gentle, furry giant named Boss.

Boss and his buddy, Katy.
(Photo description: Two large German Shepherds are in front of a decorated and lit Christmas tree.  Boss is sitting on his hind legs on the left and his friend Katy is on the right, laying on the floor. Both are looking towards the camera.)

The setting

My sons both get off the TSD school bus at a neighbor friend's house who have kids at TSD as well.  They live a quick 3 minutes away from us, rather than let my sons ride all the way to our house another 20-25 minutes later, the last stop of the bus' route, we pick them up at our friend's instead.

Another cool thing about this is that this is my daughter's classmate's family, too!  Between the two KODA* girls, they can switch back and forth between spoken English and American Sign Language. (If their classroom teacher ever said, "Quiet, kids," the girls definitely could still carry on their conversation in sign language. Ha!)

The Dog

They have two German Shepherd dogs that "found" their way home to this family. They are Katy and Boss, two furry sweethearts, yet their barks sound like they belong to 10-foot tall prehistoric wild dogs behind the front door even if you jiggle the handle or lightly tap the door with your smallest knuckle.

Boss is an impressively-sized dog with unfortunate hip problems and needs shots every two weeks to even manage to walk a couple hundred feet.

The Funny Moment

One afternoon the first week of December, Orion was walked from the last step of the school bus toward the sidewalk where Boss and Katy were on leash with their "Dad". I invited Orion to pet Boss, his little hand rode on my hand (Hand-Under-Hand) as I pet Boss's head and back. Orion then left my hand and touched Boss himself, which is the miracle here since he's our shove-the-pet-away kid. Orion quickly and unexpectedly swung his right leg up onto Boss's back, I helped him up into a seated position. Orion sat up straight, straddling Boss in perfect balance and both his hands were touching Boss's fur. What a sight to behold!

Sainted Boss did not object but we took Orion down anyway.

Boss' mom was told that he was a special dog. This story adds to the emphasis he really is a special dog!

(*KODA: Kid of Deaf Adults)

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.

Genetics

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.

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

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?

Behind the Wizard's Curtain: Mutual Touch and Shared Experiences

Recently, I was able to remember to take a video of a modest Orion during bath time to show an example of a shared experience.  There are so many opportunities for shared experiences out there!  The root of my understanding came from reading an article that discussed mutual touch.  This is very important to me as a parent that mutual touch and shared experiences lead to communication opportunities and language development.  It all starts small but the opportunities are endless... read on.

Mutual Touch

Did you ever think you could interact with your kid like this, "Hey, did you notice a whole lot of bumps, shapes, valleys and ridges on that lumpy kiddie slide?" Yes! You can have a conversation with your kid about this stuff. It even counts when your kid knows you explored WITH him.

A review of a sighted child and mother's interaction is mentioned in "Talking the Language of the Hands to the Hands", by Barbara Miles: "Perhaps the most important gesture in language development is the pointing gesture. A mother pointing at an object as she names it (“Look! Doggie!”) is establishing a mutual topic and ensuring that she and her child are focused on the same thing. The word that names the thing can then acquire meaning for the child."

And that brings in the blind or DeafBlind child's perspective in the same article. 

"Mutual touch is the most direct equivalent of the pointing gesture for a child who is blind since it lets him know most surely that there is a mutual referent, that the object named is the mutual topic that he shares..." (Miles, continued.)

If you have not read this particular article, I strongly recommend you read it from beginning to end and chew on the ideas and revel in your newfound empowerment.  (At least that was what it felt like for me, that's what hope feels like!)

It sure takes a lot of brainpower for me to remember to label things through tactile sign language that Orion and I touch or explore together. Sometimes he's still exploring the same thing or busy exploring the next thing he'd just found, which I don't want to interrupt.  (Let his fingers have all the time in touch possible.)  Or he's had enough signing input and I can't get a word in (he withdraws his hands or pushes mine away).  Or he has a "little" meltdown. It's OK, we all try the best we can.  Give him 5 minutes to rest and process his thoughts, try another time or even ask yourself whether he really dislikes that thing.

The Benefits of Shared Experiences

This leads me to a very short video (under a minute) I made of just one of Orion's millions of baths.  It's just one little twinkle of an example of shared experiences you can have with your child.

(Video description:
There are two shots in the video, the first is of Orion laying in a tub with a few inches of water, splashing the water with his arms.  The following shot is the same view but with an adult's hand splashing the water in between Orion's chest and left arm.

After the title, "An Orion Favorite: Bathtime", subtitles read:
"He loves to splash the water.
He loves to splash with Mom and Dad, too.
Splashing together makes it a "shared experience".
Solo and shared experiences are fun!
Shared experiences can lead to mutual joy, trust, movement conversations, and meaningful memories!)

Mutual joy: Did you see that contagious smile?
Trust: I am here with you.
Movement Conversation: I'll watch for signs, anywhere else that isn't the bathtub, that you might be remembering what you were doing in the tub and I can respond by joining you and acknowledging your self-initiated movement and even add some signs to the mix.
Meaningful Memories: There's nothing sweeter than knowing someone else shares this very moment with you.

A Mom's Musings

Mutual touch and shared experiences have many parallel benefits for language opportunities.  Shared experiences have dynamic movements that have better chances of being identified later on in a different context.  The movements initiated by a child can actually be used as a sign since it already makes sense to him.  The biggest thing of all that I love is that I can "look at things" with my son and he'll know it, too!

What a relief it is as a parent to know I can do this with my DeafBlind son.  When Orion was an infant, his dad and I wondered how do we get him from the point of a congenitally DeafBlind infant to a tactile-signing DeafBlind adult?  Mutual touch was one of the first inklings of opportunities we learned about however Orion wasn't exploring with his hands just yet and now five years later he's much more active with his hands and the opportunities are opening up.

(Hand development doesn't happen overnight, that's a whole 'nother topic.)

Orion was being cared for by his dad, in school or was sleeping during the typing of this blog.  That kind of time is very rare these days as he's more active! Blogging time is stop-n-go for me.  That's a nice problem for us... 

Educating DeafBlind Children: Current National Needs (With Links)

November 2, 2015 (This post is outdated now (Or could we call it a legacy post?) but still saved to help track the history of our current progress.)

Wanna chew on the idea of becoming a Teacher of Deaf-Blind (TDB)? Or DB Intervener? Or IEP provider with specialized training in DeafBlindness?  Browse nationaldb.org or message me. Let's have a dialogue on supporting our current personnel and growing more!

In this post I share about:

• Current National Needs and Works In Progress
• Orion visited the statue of Alice Cogswell and Thomas H. Gallaudet
• Professional Development and Degree Programs

Current National Needs and Work In Progress

CEC Competency Based Dialogues to Support Students with Deaf-Blindness by Dr. Amy Parker, posted on nationaldb.org in October 2015. I invite you to read the entire, richly informative article to visualize what has been happening in the years before and to imagine and believe in what could unfold for our DeafBlind children.

As mentioned in the article, Council for Exceptional Children (CEC) has knowledge and skill competencies spelled out for those who work with our kids.  Even though DeafBlindness is a very low incidence disability, there is a national theme of a need for supporting and developing our current school staff working with DeafBlind children plus a need for more numbers of qualified personnel in this field.  

The Alice Cogswell and Anne Sullivan Macy Act (a.k.a. Cogswell-Macy Act or HR 3535) that has been introduced in the US House of Representatives, as of September 2015, included "Title III" which is for our DeafBlind children.  It also has language, that parallels the needs of our kids' Blind and Deaf counterparts, that they be served by qualified personnel.  

We still need more support from both sides of the aisle in the House.  The bill has yet to be introduced in our Senate. 

You can read in further detail (and see a list of current sponsors) about HR 3535 at ceasd.org (Deaf/HH) and afb.org (Blind).

Orion Visits Alice Cogswell and Thomas Gallaudet (Photo)

Mom and Orion with the statue of young Deaf student Alice Cogswell and her teacher, Thomas H. Gallaudet on the campus of Gallaudet University. Photo credit: Tammy Murphy.
(The statue is of a seated Thomas Gallaudet and standing Alice Cogswell, both their right hands show the handshape "A" and they are on a large pedestal base.  Orion is standing on the pedestal in front of Alice, one hand is on Gallaudet's knee and the other is on his coat, Mom is holding him up with a delighted expression on her face.)

Professional Development/Degree Programs

For Texans (and those out-of-state who can make it), the path to becoming a Teacher of the DeafBlind can go through Texas Tech University's "Dual Sensory Impairment Certificate" (a.k.a. DeafBlind, that!). It can be used as a specialty area for Masters of Education in Special Education.

Interveners-to-be anywhere can take online classes at Utah State University- https://online.usu.edu/degrees/deafblindness-cert (I hope this is the right link, but it's the right school!)  Students go through 8 online credits in one year (two courses), plus do a practicum to receive their Intervener Credentials.

A bonus for Texans interested in USU's Intervener Training, there is a scholarship opportunity to pay for your studies!  Apply for a DBMAT Intervener Training Scholarship by following this link to further information and criteria- http://www.dbmat-tx.org/intervener/scholarship_letter.html  This scholarship is made available through the hard fundraising work of family members of Deaf-Blind Multihandicapped Association of Texas (DBMAT).

In other states, you can reach out to your state DeafBlind Project and inquire about Intervener scholarship opportunities they may know of.  State DeafBlind Projects (<- follow the link to a national list) are also sources of workshops of whatever length of time on a variety of topics in Deafblindness for both professionals and family members.

For your viewing pleasure, more photos from our time at the statue...

Orion's left hand appears from out of frame touching Gallaudet's right ankle (Orion loves shoes, in case you didn't know). Photo credit: Tammy Murphy  

View of Orion from the shadow of Alice Cogswell, the Gothic Revival style stripes and arches of Gallaudet's Chapel Hall is seen in the background.  Orion's right hand is touching Gallaudet's left ankle.
Photo credit: Heather Withrow

Seated Orion, with his back to us, faces south toward the statue.  Even though he does not see it, he has "been there".  I would presume he would remember the cold metal, the feet and legs (both human and chair).  Repeat visits would be needed for him to build the complete statue in his mind.
Photo credit: Tammy Murphy