An Orion-Approved Toy: Squidz

If you're thinking of a holiday or birthday gift for a DeafBlind kid who has curious hands... or any other kid no matter what their abilities are- check out Squidz!

Orion wasn't interested in it at first but as time went by he learned that they have suckers. He'd pull them off the sides of the bathtub and eventually pull them off himself when I put them on him. And the best part- which happens spontaneously and only when I don't have my camera- he would put it on himself, thwock it off, then back on again and again!

Here's an image of Shrek-Orion, courtesy of his mama before he thwocked them off.

Also if you look closely in this photo you'll see Orion's hands are open flat, palms up. He was feeling and keeping his hands exactly at the surface- 50% in water, 50% in air.  And then his mom had to go and give him Shrek antennae.

A 6 year old white-haired DeafBlind boy relaxes in the tub but also has two long 'antennae' with green suckers stuck on his forehead.

Orion Meets A New Tactile Music Experience: SubPac

I couldn't resist adding the following lines I came up with to the video:

"There's a new tactile music experience in the house...
It's boom in a packpack,
Power in a pack,
Subwoofer in a seat,
Bebop for the body,
tactile tunes for Orion!"

 The video description is in the information section under this video's original YouTube location. 

Accessibility Anxiety

A screen shot of a happy Orion and tired mom waiting in an exam room around 90 minutes past appointment time, apparently while the staff figure out what to do about a no-show interpreter and finding a VRI unit. There's more to the story of the no-show interpreter, one agency transferred all their contracts to a new agency during that very week. Problems arose, obviously! *frown*
(Image description: This timered selfie was taken in an exam room, the facing wall is white, ceiling is white, wall on the right is a dusty green color, a computer monitor sticks out of the white wall. A brown haired woman is holding on her lap her white-haired 6 year-old son who is happily hugging a piece of teal-colored egg foam. The boy is wearing dark green pants and just visible is the heel of one of his bare feet close to the camera.)

Accessibility anxiety.

Ever heard of that? This term caught my eye when it was brought up in my community- the Deaf Community. It's for worrying about any form of access- communication, physical, whatever barrier that usually is and should be there. This, I can see applied to any disability. Will an ASL interpreter be present? Will they even be certified and qualified interpreters? Are there strobe fire alarm lights in this hotel room? Will it be wheelchair accessible? Will I have to roll through mud? Is there a ramp next to the flight of stairs so I can enter where everyone else will? Is there a braille label for the women's bathroom and the men's? These are just some examples I could think off the top of my head.

Today, I called to confirm Orion for an appointment tomorrow with a new speciality doctor.  This was a new speciality to add to Orion's list- Physical Medicine and Rehabilitation, a.k.a. "PM & R". The receptionist pleasantly said, "Don't worry, we called that number and got confirmation that an interpreter will be here tomorrow."

The last two Dell Children's visits, both during one week in September failed to produce an interpreter and they pulled in VRI (Video Remote Interpreting) iPad/tablets that had serious technical problems both times. What happened both times were the same problem- the interpreter in the iPad could not see me but I could see them. How could they see my signs? I salvaged the situation by speaking to the doctors and nurses and looked at the VRI interpreter/tablet to sign what the spoken responses were.

Hospitals and clinics like VRI, I suppose because it is cheaper. However, delays and technical issues happen often. I went to the ER once and rejoiced when they conceded the VRI was not working and called in an actual, in-person interpreter and that was another hour of waiting, sleeping on the exam room bed.

VRI is not even DeafBlind accessible- you can't tactile or improvise the physical situation for accessibility for the DeafBlind patient. The size and clarity of the image of the Lilliputian-sized interpreter is at the mercy of the 9-inch tablet. 

If a Deaf person is really sick, they cannot sit up or be coherent enough (mumbling signs, fighting pain, etc.) I've woken up from abdominal surgery wanting to be put back to sleep, I don't even remember an interpreter in the room! A VRI would have had a heck of a time reading me in that state. I know there was a live interpreter because I put my foot down before the procedure, delaying the start by a couple hours, that I would have nothing to do with VRI.

As for Orion's doctor's office visits, I often wished I had a second person in the room with me- Thomas, an intervener, or a friend- so I could sign easily, without wrangling our restless Orion who's had enough of this boring little room with nothing to touch.

"Still," I asked, "is it a live person, right there in the room with us? I don't want VRI."

"Don't worry, an interpreter will be here tomorrow."

That still doesn't answer my question. I could only wonder if the receptionist could differentiate between a "live, in-the-room interpreter" or a VRI interpreter? I settle for a wait-and-see approach.

Sighted, hearing people don't have to deal with accessibility anxiety. *sigh* I don't envy my neighbors one bit but sure wish our society was accessible for ALL people. ALL.

Update, 11/17/2016:

We got one of Austin's finest... in the room! (Interpreter, that is.) I felt I was able to express all my concerns and observations, the doctor asked thoughtful questions including one of my favorites which makes him an awesome doctor in my eyes: "Other than food, what motivates Orion?"

Motivation.

Doc knows that likes and dislikes are important to consider for each individual child. I couldn't help grinning and feeling thankful for the reminder.  Oh, and to his question, I answered, "Water."

Different Signed Languages; Same Passion to Connect

Note: It is wonderful how the signed languages are different between countries as the spoken languages also are.  Fascinating also is that even though England and Australia are English-speaking countries, their signed languages are totally different.  There is British Sign Language (BSL) and Auslan!  I had to resort to lip reading when conversing with Deaf Australians and luckily they knew the ASL alphabet and spelled out English words. -Heather "Hex" Withrow

19 year-old Heather sits on the grass with a beautiful red Russian church with spires rising out of the background. The setting is remote, grassy and there are trees behind the church. This was on the grounds of the spring that feeds into the Volga River.  The Volga is Russia's largest and longest river and the "life of Russia", the beginning of history in Russia.
Photo taken in 1995.

My first time traveling outside of North America was a memorable one, it was with an educational group exchange visit during summer 1995 in the Moscow, Russia area by MIUSA (Mobility International USA). In our group, there were three Deaf students total, a blind boy, two used wheelchairs, one had epilepsy, and the others were typical students. I was newly 19 years old and had just finished my freshman year at Gallaudet U. I’ll talk about communication here, figuratively a little square inch out of  a bigger painting of experience that this trip was.  It was during this trip I had a handful of opportunities to gesture and converse with Deaf Russian citizens. In my trip journal, I wrote in such a naive and upbeat 19 year-old chatter but what was obvious then and still is something I enjoy now is that I love the challenge of communicating with other people without an initial mutual language between us.  

The American delegation, student with or without various disabilities, dressed up as land animals, improvised our costumes from what we could find in nature.  The Russians were the sea creatures (not pictured) and were a hilarious sight! I was an ape, and am crouching in the front of the group in this picture at our campsite along the Volga River.
 Photo taken August 1995.

We found a lot of deaf people in Moscow’s Red Square, many were selling souvenirs, and we met a guy in his 40’s whose name I know I got wrong but we’ll call him “Tis”.  It was not easy but a rewarding challenge working with gestures. We started to pick out each other’s signs so that it became a mixture of gestures, ASL and Russian sign language!  At one point we had our ASL-spoken English interpreter, Russian-English interpreter, Tis, and us Deaf American students in a circle along the side of the Red Square. Our English-speaking group leaders wanted to pass a message along to Tis, the Russian-English interpreter was no use since the Russian she knew was spoken and not signed.  The message was spoken in English, translated to ASL to us and we gestured and signed to Tis; and his response went back through us. Fascinating!

Heather and "Tis" in the Red Square. St. Basil's Cathedral is in the background.
Photo taken August 1995.

Another ASL and Russian sign language crash experience was when everyone in our exchange group was sent home with different host families for just one night, one of the Deaf students and I were sent home with a Deaf couple who also had a Deaf roommate. We had a hearty meal in their humble kitchen, which of course, had potatoes peeled with the new veggie peeler I gifted the mom and bottles of Coca-Cola purchased earlier at a street kiosk.  We stayed up most of the night gesturing, picking up each other’s signs and looking up the Russian word for that English word and vice versa.  We were bummed this was just one night, still it was yet another profound experience during my Russia trip.

Three American students, Heather, Tracie and Edo, and two Russian men; all are Deaf.
The guys were much friendlier than they appear in this photo and were the ones Edo and I chatted with all night with Peter's wife. Peter is in the leather jacket.
I'm on the far left. Photo taken August 1995.

Over the years, I went on to participate in the Deaflympic Games, where the world, with its many different signed languages, was brought together in one place.  I’ve gone on to visit and gesture with deaf citizens in other countries during my travels. Meetings with Deaf people were pre-arranged but often we just somehow find Deaf people by luck.  It helps when we sign amongst each other making us visible and then signs of our sighting travel fast through the Deaf community in the area. The first of all the communication barrier ascents, profound due to it’s newness to me, was in Russia where something awoke within me; I felt I was born again.  The fire within me liked very much the oxygen that I was in the midst of.

"Fish-eye" sketch in blue ink of a cozy bath house from my Russia 1995 journal.
August 1995.

Touch That Cake!

Orion enjoys a chocolate ball from somewhere in his name.

Orion had one of the most unique and DeafBlind-intriguing birthday cakes ever to celebrate his 6th birthday!  This special cake was created by Tina and Amy with that. specialty cake company, located in Austin, Texas.  It had beautiful marbleized blue and purple fondant, Orion’s name was spelled in braille with white chocolate balls, and you can see/feel a few candied constellations along the cake’s side. Inside was the chocolatiest triple-chocolate I’ve ever tasted, so yummy that there were none left over after the party.

No mistaking whose cake this is, it is Orion's.
Image description: A flat, circle blue marbleized fondant covered cake has "o r i o n" spelled in braille chocolate balls on top.  Constellations are visible on the sides- Orion and the Big Dipper. Yellow balls are strung around the entire bottom circumference of the cake.

Amy and I talked about doing a special tactile and interactive cake for Orion’s 6th birthday, a great idea right from the start! I’ve always included candles for his birthday even though it was so awkward, perhaps a tactile oxymoron, that I wanted him to touch but then didn’t want him touch when they were lit.  The chocolate balls were on top of toothpicks that were inserted on top of the cake for Orion himself to remove and enjoy thoroughly on his terms, instead of candles.   

Happy Birthday To You! (Everyone's finger-pointing "You" at Orion while Dad signs "Birthday" on Orion. 

He was already fussing when we were about to present the cake to him. To let him know that we were going to have cake, I gave him a cupcake wrapper to help clue him in on what’s going to happen. He’s always had cupcakes for his birthday so this one was going to be a surprise in two ways, it’s not cupcakes and it’s awesome! The wrapper calmed him down as he crunched it in his hands.  We set the cake down in front of him sitting in his red wagon, he touched the cake, picked and pulled at the fondant and once he discovered the Orion braille in chocolate balls, he committed to eating them.  He totally touched that cake!  Each slice a guest had was blessed by Orion’s fingerprints. 

Orion works on the last braille dot and feels Mom cutting apart the last pieces of cake.

A, Orion and S pose with the cake after Orion started picking off the chocolate balls.

 Amy has a special place in Orion and our family’s life. She was Orion’s first teacher, even though she trained as a teacher of the Deaf, when we moved to Austin, Texas just in time for the 2012-2013 school year.  Amy dove in head first, learning how to work with our precious Deafblind 2 year-old son.  We immediately saw her on the floor with him, putting herself in his skin (I’d say “his shoes” but Orion doesn’t like wearing them) as well as going to workshops, taking intervener courses and geeking out on DeafBlind strategies. Orion was so very fortunate to have her on his team early on!  Now the same Amy we know is in a different setting and is not a stranger to Orion.  She’s in the kitchen now, creating eye-catching specialty cakes with her business partner, Tina. She still does intervener work with Orion.

Amy holds chocolate-mouthed Orion!

Little did I know, she and my husband, Thomas, schemed up yet another awesome surprise cake to celebrate my 40th birthday.

that. specialty cake company also made my birthday cake!
Two tiers of cake and edible art!  Bottom was white cake while the top layer was angel food.

Close-Up: A sweet version of me painting a photograph of the kids and I on a sugary easel.

Photos of cakes created by that. specialty cake company can be found on Facebook, http://www.facebook.com/thatspeciatlycake and on Instagram, “thatspecialtycake”.  You can make appointments by e-mailing hello(at)thatspecialtycake.com.

Razoo Fundraiser: Orion's DeafBlind Intervener Internship Fund

This video is in American Sign Language. Subtitles and voiceover is in English.



Links to the resources mentioned in the video:

Fundraiser: https://www.razoo.com/us/story/Nvfh3g Last day to make a donation is September 10, 2016.

Facebook Page: http://www.facebook.com/O.T.Withrow

Deaf Blind Kids, including the child count statistic shared in the video: http://www.nationaldb.org

DeafBlind Interveners: http://www.intervener.org

Finding the Trail to Tactile Sign Language

When Orion was a baby, Thomas and I wondered how he would get from where he was as a baby, with fists and Moro reflexes, all the way to a tactile-signing DeafBlind adult. Just like the DeafBlind adults in our Deaf community. “How?” we wondered and it would stay like that for a couple years.

Meanwhile, within hours of Orion’s birth in July 2010, we went ahead and started with what we called “signing on the body” with our sign for “MILK". We decided we should go to him rather than expect him to put his little baby hands on top of our hands because that’s simply something infants don’t do, except perhaps grabbing a single finger with their fists.

One month old Orion grabs Daddy's pinky finger.
Description: Extreme close-up photo where a baby's forearm, while wearing a light blue long sleeved outfit, is visible holding onto an adult's pinkie finger.

I’ve always believed in the Hand-Under-Hand strategy for the DeafBlind child’s autonomy, observations, attention checks and participation opportunities. In the past year, I realized we answered the 6 year old question, that one of the pathways to tactile sign language communication was Hand-Under-Hand! Orion is learning that his hands make a difference, with them he is exploring his physical environment, other people’s hands and what their hands are doing. He’s starting to really see with his hands now, bring to life the saying I heard weeks before he was born, “DeafBlind children’s hands are their eyes". 

We still do use “signing on his body” also known as “touch cues”. What we do these days with Orion is letting him know we were here, then go to his hands (or he finds ours) and start out tactile signing (Tactile ASL, also known as TASL) since he’s getting better with voluntarily following our hand-under-hand action. When Orion doesn’t want to touch our signs, we then switch to signing on him but keep trying to return to TASL. We also continue to use touch cues when the TASL sign is new to him. 

Also an option is to imitate a motion or action associated with the action, this may speak for itself or is already identical to ASL. For example, to sign “OPEN” for twisting open the peanut butter jar, we hold an imaginary jar with the left hand while the right hand is on top imitating a lefty-loosey twist motion. That is the conceptually appropriate sign for that “OPEN” situation and it is what we actually do to open the jar. Because of their similarities to functional motions, these signs are likely to be among the first in Orion’s sign vocabulary.

Somewhere in that mix we must continue to use object cues, which are real objects or a recognizable part of the whole object. Children will understand what the object cue is since they’ve figured out what it’s function is, for example, a bottle, and it is in their hands right now and that’s their reference for what is to come next. Knowing American Sign Language, or any other language, is where you have the ability to talk about something that is not there in front of you nor happening right now. This is why we rely on object cues since Orion is not "there" yet. 

Orion feels his big brother sign "BUCKLE-TOGETHER".
Image description: A white haired 6-year old DeafBlind boy, shirtless and sitting in a black stroller has his hands on top of a 11-year old boy's hands signing "BUCKLE".

Hand-under-hand strategy allows Orion to feel his big brother snap together his stroller buckle. Orion may be feeling the same action with the skin of his abdomen.
Image description: A white haired 6-year old DeafBlind boy, shirtless and sitting in a black stroller, has his hands on top of a 11-year old boy's hands, connecting two ends of a buckle.

Orion still pulls away a lot from our tactile signs and hand-under-hand efforts but we noticed he is willing to “look” longer and longer. At 6 years old we are still seeing a slow but true trend of growth and participation from Orion. It’s a long journey and we need endless springs of patience, but it is still possible!

I’ll leave you with an enlightening and affirming quote shared in one of the OHOA Modules*, “Communication at any level is still communication.

*Open Hands, Open Access DeafBlind Intervener Learning Modules, http://moodle.nationaldb.org.

Here is a video also related to touch cues, body signs and tactile sign language.

We Need to Foster the Growth of Meaningful and Effective DeafBlind Education in the United States

Orion lovingly hugs his mom's hand.
(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)

If you’ve met one child who is DeafBlind, you’ve met just one DeafBlind child.  The number of DeafBlind kids in the United States is so small, since it’s a low-incidence disability. In 2014, there were 9,133 children from birth to 21 identified as DeafBlind, https://nationaldb.org/childcount.  My son Orion is one of the 1,709 DeafBlind children from birth to 5 years old counted in 2014.  DeafBlind children are also diverse due to additional disabilities, family background, communication needs and growth, levels of deafness, how they use their vision, if any, and how they move through their environment.  Many were born DeafBlind and many became DeafBlind before or after language acquisition and concept development, or later in their K-12 educational years.  Most importantly, DeafBlind kids have their own personalities and favorite things to do!  Check out my blog, “A Mom’s Musings”, at http://hexwit.blogspot.com for stories and videos of nearly 6 year old Orion, our family, and links to online resources and information that I found extremely helpful. You can also find Orion and other inspiring children on social media with hashtag searches for #DeafBlindKids, #DeafBlind.

There are DeafBlind Projects serving each state, providing technical assistance in the classrooms and in family homes, workshops, training, networking with other families and resources.  Find your state’s DeafBlind project as well as pretty much anything else “DeafBlind" by visiting the National Center on DeafBlindness’ (NCDB) website,  https://nationaldb.org  Finding my state’s DeafBlind project was one of the first things I did… before Orion was born!  On my blog for new parents is a list of items, including early intervention, parent-to-parent connections, communication, playing, etc., to consider for families of DeafBlind children, http://hexwit.blogspot.com/p/for-fellow-parents_19.html 

Many DeafBlind children benefit from #Interveners who are trained in intervention, communication and educational strategies for children with deafblindness.  Interveners can be found in schools, community and home but they aren’t everywhere just yet.  This is just one small part of where the Cogswell-Macy Act will make a difference in the lives of DeafBlind children, by properly identifying and counting DeafBlind children, recognizing and facilitating the growth of qualified personnel, whether they are interveners or teachers.  Photo contributions of many families with DeafBlind children made it possible for me to put together a video in support of Title III, the DeafBlind part, of the Cogswell-Macy Act, https://www.youtube.com/watch?v=wVS3H9Z2FHM 

The biggest concern is that the contents of the Cogswell-Macy Act needs to happen “yesterday”, our future generation of DeafBlind children are being born, celebrating their first or sixth birthdays soon with their parents advocating for what is appropriate for their precious family member.  

With the leadership of the National Center on DeafBlindness, funded by the Office of Special Education Programs (OSEP), leaders, educators, interveners and family members of DeafBlind children and adults worked together on specialized module-creating teams over several years developing Open Hands, Open Access (OHOA) DeafBlind Intervener Modules.  You can visit the website at   http://moodle.nationaldb.org. The are currently 18 OHOA modules available with the final group of modules being field-tested right now and they will be revealed in the not-too-distant future.

You don’t need sight nor sound to inspire other people, that’s the gift our children are giving us and the world.  We need to give back to our DeafBlind children by the way of appropriate and meaningful education- we need to pass the Cogswell-Macy Act which has been introduced in the House as #HR3535 but not yet at all in the Senate. To pass an act of Congress is no small feat! 

In the midst of advocating you still can make a difference by supporting the growth of interveners and Teachers of DeafBlind (TDB).  Officially, TDBs are still very new that, at least in Texas where my family lives, there isn’t state certification offered yet like there are for Deaf education, blind and special education, and so on.  However, the passion for teaching DeafBlind children have been around for years!  Yes, to families there doesn’t seem like there are enough of them. We can help meet this need by the way of scholarships, planning on training, convincing our local college or university to offer certificates or degrees in deafblindness as interveners or teachers!  Or even start working in this rewarding field ourselves!

I want to thank each single person, wherever on this planet they are, who stumbled into or sought out the field of educating DeafBlind infants, children and youth. Thank You from the depths of my heart!

Laugh Everyday

It may be corny but each one of us needs to laugh every day.  When you do, you become happy, you are experiencing small, individual moments of joy.  Even when you sincerely try a fake laugh for someone else, it's likely to be contagious anyway and you all fall into genuine laughter and joy.  When you accomplish laughter everyday, you have successfully incorporated laughter in your attitude and lifestyle.  It is even better when it is your family's lifestyle, too.

In Mitch Albom's book, "Tuesdays With Morrie", he talked about balance, that one cannot experience true joy without experiencing sorrow.  There's a balance where you swing from side to side, from joy to sorrow and vice versa.  It is not good to stay exclusively on one side of this balance, whether it is happiness or sadness.  I can come across as an eternal optimist in this blog and trust me, I have fallen flat on my face before.  What we all need to do is appreciate being down and then put on our big kid underwear and get up again.  Get up and make the best of where you are with what you have.

Anyway back to laughter...

If you can't remember if your child has laughed today, do something! Tickle him or her, swing her, go for a drive and roll down the windows, squeeze his cheeks and touch his nose (that something Orion does to himself, too), blow raspberries, etc.  Those were comments from each person in our family when I asked them what they do that makes Orion laugh.

Here's a video of Orion giggles, squeals and laughter to enjoy!

"Really Happy Reel"

Orion giggles, squeals, and laughs his way through this 2 minute video with special appearances by his big brother and sister, deaf family dog, Dad and a DeafBlind Intervener. (Minimal description is at the YouTube location, will elaborate soon when time is available.)

Playing Through Touch (VIDEO)

This video is about playing through touch and using anticipation, with Mom's fingers crawling up his chest to tickle his neck. This gives Orion positive experiences with tickle and anticipation games. (Text is in the video description at its original YouTube location.)

Sighted children are able to see the tickle monster or The Hand diving in to tickle-bomb them.  If you used the same sneaky technique on your DeafBlind child, you're going to scare them.  Thomas and I wanted Orion to experience the same thing but in a DeafBlind way- what's similar in both situations is anticipation in a fun way.  Orion has no sight or sound* so he's learning mainly through the senses he does have, most commonly known as touch, taste, smell.  (There are more senses beyond the 5 senses, too, by the way!) In order for Orion to know we're about to come in, we go ahead and gently touch him on his abdomen, crawl up his chest in a slow-to-quick motion (slow most of the time) to where we ultimately tickle him.

We have accidentally frightened him, even when we mean well.  I recall one time I was so excited, I mean, so emotionally overtaken when he accomplished something, I tickled him right away in celebration. He was startled. I hoped I did not scare him to the point he avoids doing that skill again.  (He did it again anyway and I knew better to be gentle.)

*Orion has bilateral cochlear implants. He currently wears just the left processor for brief periods of time in school, especially during music class if he leaves it on.

Orion's Beautiful Boy Blues (Eyes)

Realistic blue eyes by Randy
Image description: A close-up photo of a DeafBlind 5 year-old boy with fair skin and white hair seemingly gazes off into the distance while resting the right side of his face onto his favorite plush red blanket.

The time we spent "trying on" the new scleral shells paid off on Monday, it told us that the one in his right eye was too small. Orion had both "eyes" in the whole time I was out strolling in the area but by the time I got back into the waiting room, the right eye was GONE! No matter, Randy knew this would happen as it's happened for years with his pediatric patients.

The plan: Randy is going to make both shells bigger, the left eye a little bigger, and the right one even bigger and mail them to me this week. Sure enough, they arrived Thursday night while I was out coaching at a track meet! That was only because I confirmed I was comfortable putting them in Orion's eyes. I'm only guessing that if I weren't comfortable, he would just have us stay until the end of the day when he is finished with the eyes.
Y'all asked fascinating questions! No, no, they weren't rude and I'm happy to answer them.

Microphthalmia

Yes, Orion has his own eyes and they're really small, it's called microphthalmia. I tell kids they're the size of peanut M&Ms. Just like peanut M&Ms are different sizes and shapes, so are Orion's eyes because they're not identical sizes either. Ironically his smaller right eye has some light perception while his bigger left eye is totally blind.

Normal eyes still grow a little after birth but I am not sure about those who have microphthalmia. According to a Q & A the American Academy of Ophthalmology website: "The eyes undergo considerable growth especially during the first two years of life, with a second growth spurt occurring around puberty. The length of the eye of a newborn is about 16.5 mm, while that of a full grown adult is about 24 mm."

I remember learning that the front of our eyes are already developed when we were born, but it's the back part of the eye that is still growing. (I'll look for the source of that information and post it here.)

One of Orion's old scleral shells, which was made while we lived in Maryland, sits next to a dime for size reference in a 2 framed image. The shell is wider than the dime.  In the top image, the shell is resting on the table and in the bottom image the shell is flipped over showing the "smooth, scooped out" back part of it that goes over the real eye.

The Scleral Shells

The "eyes" that go on top of his micro eyes are really called scleral shells or conformers. The clear ones look like contact lenses on steroids and aren't really clear anyway. I can confirm that because took a peek through them myself.

These conformers do not improve vision even though they look so realistic. Their purpose is for supporting his eyelids, to allow them to blink, to stimulate the bone in the eye socket and sinus region to continue to develop normally, and last but not the least, it improves human connection, too, when they are painted to look realistic.  Randy explained that one of his clients noticed that more people talked with her when she had the realistic eyes than when she didn't have them in. 

It is my understanding, as I've only 5 Orion years of experience on this topic, that you increase the size of the shells during the early childhood years and when your growth slows down, so does the need of changing the size of the shells.

Blue, it is!

It's a no-brainer that Orion's painted eyes would have blue irises.  The rest of the family all have blue eyes, too.  Orion's real eyes are blue, too.  The pupil of Orion's shells will be clear just like our own pupils are clear.  It just looks black because it is dark inside our eyeballs.

Blinking

Back to the topic of blinking- if you look at your eyes using a mirror and you blink. Do you notice only the upper lid actually does all the blinking work while the lower lid lounges around? Maybe it's just me but go ahead and try that yourself and see what you find. In Orion's case, when he does not have conformers in, his upper lid is unable to blink. It just hangs there and often it gets behind the lower lid. That often caused him irritation. Leaving in the conformers 24/7 is recommended.

I bet you would throw off people who aren't lifting their own weight when you say, "Don't be such a lower eyelid!" 

I just used that line on Thomas and successfully confused him! (To his credit, it was a test and not an actual nagging moment.)

It's Never Too Early

Orion wore his first scleral shell at 5 months old (December 2010). He cried for a while when it was first put in but then that was it. No more crying.  You can read more about the path that led us to this moment in The Second Opinion: The Ocularist.  If his shell fits snugly, he leaves them alone and seems to prefer they stay in because when they're taken out, he rubs his eyes a lot.  If they're too small, Orion will pop them out and immediately loses them somewhere or plays with it in his mouth.  

"I'm Looking For My Son's Eye"

I know many people can relate to this line whether it's their child's, friend's or their own eye!  It's funnier later rather than in the moment.

I recall looking at Orion and suddenly realizing a shell was missing and after looking around in his crib I'd find it in his happy mouth.  So as of this recent Monday, there's an eye looking up from the ground somewhere in Dallas, Texas and a clear "eye" was lost on the world's "busiest" carpet in the world in a bowling alley/roller rink establishment in Lynnwood, Washington. And yeah, I've actually had to answer when asked what I was looking for, "I'm looking for my son's eye."  

Much to my delight, they helped us look for it.  So practical and straight-foward. No-fuss good samaritans. 

The Shells Don't Hurt/We Fear What We Don't Understand

The shells do not hurt Orion.  The most fuss he would make is if we don't get them cleaned when they should be cleaned (when he has a cold and gunk builds up on it) or if 6 months has passed since his last polishing.  The other times his other 6 tentacles would come out is when we need to take out or put in his scleral shells.  Orion is understandably defensive of his face, over his eyes, ears, mouth and nose.  It gets better when he understands what is going on and because of this he doesn't go Kraken on the medical professionals. 

What we do is tap on or near where the doctor will look or do something on.  We would offer him the stethoscope, otoscope, tongue depressor, toothbrush or any tool that is to be used.  Real things, experiences and routines teach Orion concepts quicker than anything else.

Insurance Coverage

The cost of the scleral shells all depends on your health insurance.  Our policy with our previous insurer, Kaiser Permanente, had 100% DME coverage.  DME means durable medical equipment and that includes wheelchairs, walkers, diapers, and yeah, prostheses! Unfortunately some insurance companies have lower coverage percentages like our current private insurance covers only 75% of the cost of DMEs.  If a special needs stroller costs $2,000, we'd have to pay the other 25% which would be $500.  Any help we could get was much appreciated, it's just a bummer to step down to that from 100% coverage from when we lived in Maryland.  

However, in October 2015, Orion was finally approved after 10 months (the epic struggle is another story to be shared) for Medicaid in Texas through the DeafBlind with Multiple Disabilities (DBMD) Waiver.  To be eligible you have to be legally deafblind and have at least one additional disability.

There is no age minimum to apply! (Many thanks to the parents of deafblind Texans before us who fought for this.) So, yes, Medicaid covered the cost of these scleral shells.






So that's how the eyes roll. ;)

Our Waardenburg Syndrome Connection

The first part of this post was originally written in May 2012 while we were still living in Maryland, I just found it in my private journal. Orion was 21 months old at that time. The information that reflects Orion's genes is the same with one new exception. He's unofficially not the only child with this.

May 2012

During our last visit at the National Institutes of Health I learned both copies of Orion's MITF (microphthalmia-associated transcription factor) genes are mutated.  One copy of my MITF genes is mutated, we have stumbled upon why I am Deaf.  I did go to Gallaudet's Genetics Clinic while I was a student there (the clinic is now closed).  The result then was that I didn't have the famed C-26 gene (Connexin-26) that they frequently tested for.  I was among the "20-30 percent of those who were deaf due to unknown causes". 

That's me in the middle sitting next to my little brother, Jeremy, and Forrest, a neighbor, laying on his side behind us. Photo taken probably in 1980-81.
My parents learned sign language for me.
No one knew why I was deaf... until I had Orion many years later.

We've made several trips to NIH's National Eye Institute to be evaluated, photographed, scanned, blood drawn upon the request of their bow-tied guru genetic ophthalmologist, Dr. Brian Brooks, and his team.  They zeroed in quickly on what gene to check. (Children's National Medical Center also sent out a couple blood samples to be gene-tested for other syndromes and they came back negative.) Samples of Orion and my blood were drawn on our 2nd trip and a few months later confirmed our MITF genes were affected.

During creation, each baby gets a copy from each parent to form 2 copies.  One copy of my MITF gene is deviant, excessively creative, non-comformist.  This is likely a de-novo mutation (first generation).  Orion's MITF genes went up one notch with both coming back with a mind of their own.  The whole genetic and physical makeup of Orion is a first of his kind.  The man behind the bow-tie said you can actually call it the "Orion Syndrome".  Sounds like a sci-fi flick!  However, it won't be named that way officially but we family members can call it any way we want in our house.  Tentatively and unofficially we are referring to this syndrome as Waardenburg Syndrome Type 2a+ (note the plus).

Everyone has 2 copies of the MITF gene. Everyone. 

If you have a mutated copy of the MITF gene on the short part of the 3rd chromosome, you have Waardenburg Syndrome type 2a.  That's what I have.  On NIH's website, the information is fascinating, especially when the description of the MITF gene and pigmentation issue makes sense related to Orion.(http://ghr.nlm.nih.gov/gene/MITF) This is where it gets fuzzy for me.  The way I understand this, because both copies of Orion's MITF genes are affected, it's something more and since its the first time it's documented in a human, we don't know what else that may be different for Orion. You would know what to expect during the lifetime of a person with a not-as-rare syndrome.

It's as if Orion is waving, "Hi, Mom."
A black and white MRI image slice done at Children's National (DC) showing one of Orion's hands when I was around 6 months along in my pregnancy.  Dark fingers are outstretched, amongst dark vessels and a lot of white areas.

I was truly surprised that we discovered quickly how Orion was deafblind.  As soon as we knew his eyes were seriously undeveloped in-utero more than 2 years ago, we wondered, "What happened?"

(He was diagnosed in-utero as having bilateral anophthalmia but after a visual inspection and another MRI following his birth the diagnosis was changed to bilateral microphthalmia.) I checked the labels of chemicals or paints that I thought I might have used around or before the early weeks of pregnancy.  Nothing appeared dangerous.  I'm glad the mystery is gone and it's not something stupid I did (if I did anything stupid).  It's all in the genes.  If we'd known beforehand about our genes and our odds of having a deafblind child, that probably wouldn't have stopped us anyway.  

It was fine with me that no one could figure out why I was Deaf.  The cause was .00000001 of who I am.  During our quest to find answers regarding Orion, we "accidentally" stumbled upon why I am Deaf.  "Oh, OK.  Cool.  Ohhh, that explains it.  Fascinating.  All right."

Thomas may have also been misdiagnosed all these years with branchio-oto-renal syndrome.

Orion's sister, Tasia's blood was drawn even though the genetics team suspected her copies of the MITF gene were intact.  Tasia's intensive eye exams, photographing, scanning came back normal. Thomas and Skyler will pay them a visit later this month and offer up an arm each to the lab technician.  Once Thomas wraps up with Bow-Tie, and the remaining gene test results come back the team will have the whole picture.  They are planning on putting together an article for a scientific journal.

Update in March 2016:

During summer 2012 we learned Thomas and Skyler have identical mutations on one copy their MITF genes!  I was impressed that it can actually be tested.  They could see and attribute Orion's genetic "misspellings" to each parent, one of Orion's MITF genes matched mine, and the other matched Thomas'.  Remarkable!

Tasia's MITF genes were unaffected, therefore she doesn't have Waardenburg Syndrome type 2a. She's not even a "carrier".

Orion on his platform swing,
sporting his blue long leg cast on
his right leg. August 2015.

If a couple, both having Waardenburg Syndrome Type 2a, have children, they could hit any one of three possibilities: 25% chance of a hearing child, 50% chance of a deaf child with Waardenburg Syndrome Type 2, and 25% chance of a deafblind child. That's exactly how it turned out for our family. Skyler is Deaf, Tasia is hearing and Orion is deafblind.

Before the end of June 2015, Orion was the only one of his kind.  Now he has a younger "buddy" in Clarisa Vollmar (you can find her page on Facebook, "Clarisa Vollmar", and you can read my blog post about the two at Two Of A Kind!).  I also kind of covertly set up on Facebook a page 2 years ago called, "A Mom's Musings: Orion the Kid" and started using it again. One day the two white-haired deafblind beauties will meet.

Thomas, Skyler and Tasia flew from Texas to Maryland to visit Dr. Bow-Tie in August 2015 for further testing, check-ups and a skin biopsy.  Orion could not go at that time since he was sporting a lovely blue long leg cast that would've made traveling unpleasant for him.

Orion and I finally went to NIH in October 2015 for the same testing our family members already did. Orion did amazingly well. We went to meet dear old friends and pay a visit to a legislative aide in the office of Texas Senator John Cornyn to share information about the Cogswell-Macy Act. It was a terrific trip and we've always appreciated our interaction with Dr. Bow-Tie's team (he wasn't wearing bow ties this time) and our stay at NIH's Children's Inn was a home away from home.

Our Family's Thoughts On Publishing Genetic Information

Since the beginning, Dr. Bow-Tie's team was interested in publishing an article about the genes behind Orion.  We were reluctant about that information becoming public.  As the short years went by, we realized the benefit of having this information out there was to be able to connect with someone else. Who knows if there's another family out there with a child like Orion, not realizing what he/she had? We gave NIH permission to publish their findings.  They had a few more tests they wanted to do before actually publishing, such as ruling out certain genes WS2a could be misunderstood for.  One popular assumption by just looking at Orion is that he has albinism, which he doesn't have. In the middle of all that, Clarisa was born!  She and Orion looked like they could've been siblings.  Ironically Clarisa's family is not one that is "way out there, unseen" but a family we already knew in the Deaf community!  (Note: Any questions about Clarisa's genes can be answered by her family.)

My Musings

I know in the future there will be more Orions and Clarisas, especially in the Deaf community since I believe many of us have Waardenburg Syndrome and don't realize it. Just like Thomas and I didn't know we had until our little wizard Orion was born. 

Orion and Mom do a selfie on the trampoline.
Image description:  Brown haired, sunglasses-wearing mom has white-haired Orion sitting in her lap. Orion's face is visible from the shoulders and up. The bottom third of the photo is the trampoline, center third is a wood fence, top third is the blue sky partly covered in tufts of white clouds.

An Orion Favorite: The HOPSA dress

I enjoyed attending Active Learning workshops here in Austin so much I went twice and I would go again. There's always something I overlooked or a new perspective on play for kids with additional needs that I realize. All our kids' job from birth to 5 years old is to PLAY! In Orion's case, we'll encourage him to keep on playing no matter what. We can see he tries new things physically and he enjoys it immensely. His glee is contagious!

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” -John Lennon

Here's a 5-minute snippet of the hours and hours over days that Orion spends playing in the HOPSA dress.

Disclaimer: It is very important to note, you really shouldn't let your kid play in equipment without the security harnesses it provides.  Don't try this at home, folks!

The Cogswell-Macy Act: If It Were Already A Fact in 2012

Original photo by Clare Cassidy Photography, artwork by Heather Withrow.

If the functions of the Cogswell-Macy Act were already in place in 2012, two years after Orion was born, believe it or not, we may still be living in Maryland today!

In a nutshell, the Alice Cogswell-Anne Sullivan Macy Act is an improvement on IDEA (Individuals with Disabilities Education Act) particularly for students who are deaf and hard of hearing, blind and deaf-blind.

Texas is a hidden blessing, though.  It's a different kind of beautiful than I'm used to growing up in the Seattle, Washington area.  Austin is bisected by "Lake" Austin, just like the shipping canal, Lake Union and the Ballard Locks bisecting the Emerald City. Both cities don't have a professional basketball team.  Both cities have city-favorite post-secondary institutions in University of Washington and University of Texas. However, the resources available for my children are not similar to what is available in Texas.  Again, if the Cogswell-Macy Act features were already in effect nationally, the entire state of Washington would be educationally viable for my sons.  I would have had a great case for us to move to Seattle to join the rest of my family in the region where several generations of my extended family lived/lives.

Our situation in Maryland in 2012 was that with the diverse needs of our 3 children, no matter how we strategized it, only two out of our three children would have appropriate support and education in school. Our oldest son, Skyler, is Deaf, our hearing daughter is a KODA (hearing Kid Of Deaf Adults), and our youngest son, Orion, is DeafBlind.

We looked at 5 other states across the USA, the programs and services were so diverse. Coming out on the top for at least the Withrow family's needs, were the Texas School for the Blind and Visually Impaired (TSBVI), the Texas DeafBlind Outreach, and the Texas School for the Deaf (TSD).  Quite an impression was made on my husband and I seeing the qualified personnel working with Deaf and hard of hearing students at TSD and interveners working with deafblind students of various abilities at TSBVI.  What we saw was exactly what our DeafBlind son, Orion, needed to thrive in a learning environment!

Interesting tidbit: Thomas' father, Thomas, Sr., was born and raised in Dallas.  He graduated from Texas School for the Deaf in 1949.  He would've been so pleased he has grandsons at TSD today.  Thomas, Jr. was also born and raised in Dallas but since TSD was an overflowing district placement-only program at that time, his parents were unable to send him to TSD. Because of that, they moved the family to Maryland to enroll at MSD.  Thomas was 10.

Back to the main story line.  Sadly, the consistency and continuum in support and qualified personnel, both for Deaf and hard of hearing and deafblind students, as seen in Austin, Texas is not seen in all fifty states! 

Family members of deaf blind children in other states have contacted me (and I'm glad to help!) for advice how to get their DeafBlind child the appropriate support he/she needs. 

What is the point of having a free and minimally appropriate public education if you don’t have qualified personnel ready to help make it “stick” in a concrete, non-abstract way? 

We parents are not asking for a Cadillac education.  Even with a good ol’ Ford education what good is it if you can’t ‘see’ it in order to drive it?  That’s where trained and qualified personnel can and will make a difference!

"What you do makes a difference, and you have to decide what kind of difference you want to make."-Jane Goodall

Ah, I can dream of this happening in all fifty states, can I?  I'll dream and keep on trying to do my part for our children.  Sometimes I feel like a little speck with a little voice... but then I remember Dr. Seuss' Little Cat Z who has "Voom" in his tiny striped hat?  (In "The Cat in the Hat Comes Back", Voom went on to clean up all the mess the Cat in the Hat, plus the other cats B, C, D, etc. did! Everything!)  So, we need a Voom... no, a bunch of Vooms to make a boom for our children who have similarly-sized (a.k.a. low-incidence) "disability"! 

Who will be our Thing D and Thing R introducing the Cogswell-Macy Act on the Senate floor?

A Cat In The Hat with a mobility cane.
Illustration by Heather L. Withrow, 2016.
(Description: illustration of the famous tall red and white hat, sticking out of the bottom of the brim are black feet, black tail and a black hand holding a mobility cane.)

I know there are voomers out there.  Keep on vooming!  Deaf, blind and deafblind children should be able to get their free and appropriate public education exactly where they live. They should not have to move to the state next door or across the country.

Cogswell-Macy Act Information

• Conference of Educational Administrators of Schools & Programs for the Deaf
• http://ceasd.org/child-first/alice-cogswell 
• American Foundation for the Blind
• http://www.afb.org/info/get-connected/take-action/12
• American Council of the Blind
• http://acb.org/LICogswellMacy
• Read the full text of the Cogswell-Macy Act
• http://www.afb.org/info/get-connected/take-action/complete-text-of-macy-act/125

Watch H.R. 3535, including sponsors by party, in govtrack.us: https://www.govtrack.us/congress/bills/114/hr3535

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)