Sunday, April 26, 2015

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.

Sunday, February 22, 2015

Haben Girma at the 2015 Texas Deafblind Symposium



Photo from left to right, seated: two communication assistants (one with a wireless Apple keyboard), Haben Girma with her refreshable braille display, and behind her, a standing ASL interpreter for the audience.  
CART is projected on a screen in the background.
This photo above was taken during the TX DeafBlind Symposium breakout session on advocacy with our graceful Deafblind attorney Haben Girma. Haben was the first deafblind person to graduate from Harvard.

It was fascinating to watch the relaying of information through various modes of communication including, computer to braille display, ASL interpreter, Spanish-English interpreter all with CART (real-time captioning) going on in the background. Information sent from computer to Haben's refreshable braille display included what was spoken AND facial expressions of the audience members. (I was busted!)

Also out of the frame of this photo were two teams of CDIs (Certified Deaf Interpreters) tactile interpreting for two Deafblind individuals in the audience.

It was a refreshing experience knowing everyone had access to what was going on in that room.

Earlier, during her part of the keynote presentations, she shared about her journey as a Deafblind person, from trying to fit in at her school to now truly enjoying being different.  She identifies herself as Deafblind.  I agree with her about using "Deafblind", in one word, rather than Deaf and Blind, Blind and Deaf, etc.  Personally, I understand Deaf plus Blind does not compute correctly to represent the challenges and identity of being Deafblind.  Deafblindness is so different than being only Deaf or only Blind.

I had the pleasure of talking with Haben in person about countries we visited and one I have yet to visit that she already did: Turkey.  We communicated via the keyboard and her braille display and then moved over to tactile sign language with a bit of Pro-Tactile/affirmative-touch feedback on her arm.  She had a person at her side relaying facial expressions and whatever else, on Haben's back, (also a component of Pro-Tactile) that they agreed in advance that she wanted to know. It was a pleasure!  

Her name sign is the letter H pointed down at the open, upward-facing palm of the other hand in the motion of the sign for dance, to represent her lifelong love of dance.  She particularly enjoys partner dancing.

The entire symposium was successful and inspiring.  I look forward to the 2017 Texas DeafBlind Symposium.

Haben, if you're reading this, I look forward to the next time we meet!

Haben Girma spoke during her part of the keynote presentations at the Texas DeafBlind Symposium.
She received questions and audience information via her refreshable braille display on the podium, an ASL interpreter for the audience stood around 5 meters to Haben's left.

Sunday, February 15, 2015

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.

Friday, February 13, 2015

Treasure TSD Introduction

As a musing, caring, concerned mom of two sons at Texas School for the Deaf, after witnessing on Feb 9th, Senate Finance Committee members discuss (ranging from casual, cautious, to serious) about the sale of the land TSD is on, I share a YouTube introduction to Treasure TSD.

I gathered that our Senators do support and believe in our school's performance and potential so I am flummoxed with the idea of even selling, even if just a little part of the land TSD sits on for a one-time fund source.

Save every bit of the land and school where Texas' Deaf/Hard of Hearing/DeafBlind children learn/learned.

Tuesday, January 20, 2015

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!
 



Monday, January 5, 2015

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.




Tuesday, December 2, 2014

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