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

Our H-E-B Happenings

I'm still in awe of moments when I realize something isn't what it seems with Orion.

Tonight I was at HEB grocery store at the corner of Oltorf and South Congress with Orion and Anastasia looking for last minute dinner ingredients. I wheeled my lil wizard around the store picking food and putting it anywhere there was space on his "stroller". I put a huge bag of tortilla chips on his lap, Orion proceeded to hug it like it were a teddy bear. Hmm, who needs a teddy bear when you got a fabulous bag of chips. Stroll, pause, pick, stroll. Repeat.

In line at the cashier, I reached down to touch the bag of chips, Orion found my arm and brought my hand to the top of the bag. That's his way of asking me to open the bag! It dawned upon me that I didn't take him to the store often because of tough trips in the past. That's going to change anyway due to our local store having its own "Caroline's Cart" now. Anytime he's able to touch a bag of chips or pretzels, it was at HOME! The cool signing cashier dude recognized Orion's intense interest in the bag and handed it right back to me after scanning it. Orion held on to the bag all the way to the van, up into his seat, and... yeah, of course I opened it for him!

One day he will sign "open", like I did model it for him tonight but for now, grabbing wrists and hands will do! Clear communication intent happens every day when it comes to food (no surprise!) and anything he can get our hands to touch.

Here's a post from my Facebook wall on September 9, 2015-

"Orion in the new "Caroline's Cart" at our local HEB grocery store [not the HEB mentioned earlier in this post]. Its a cart made with a seat for kids who need more support than the typical cart kiddie seat. He had a GREAT time, so did I with this newfound ease of shopping. I was stopping and going, making fast u-turns in aisles. He tried to eat a potato while feeling me putting/dropping them in the plastic bag. He WILL know how french fries are made. Fun!"

My suave son modeling in the cart.

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.