Monday, May 1, 2017

Public Comment to TEA in Favor of Teacher of DeafBlind Certification

To State Board for Education Certification at Texas Education Agency,

We, as people in the state of Texas, have an unique opportunity to clarify and rightfully promote the needs of DeafBlind children.

I am a Deaf mother of three completely different and fascinating children, my oldest son is Deaf, my daughter is hearing, and my youngest son is DeafBlind. It is my passion as a parent who has seen the light of what is tried and true, to contribute to the efforts of recognizing best practices, intervention, educational and communication support that is needed to make a difference in the growth of children in our low-incidence disability community. All of this started when my husband and I realized, before our son Orion’s birth in July 2010, that he would be DeafBlind. I took off into the DeafBlind horizon of information and resources on the Internet and enjoyed meeting educators and fellow parents. Here I will share what is just a scratch on the surface and why we must encourage certification for Teachers of the DeafBlind (TDB).

Deafblindness is not just about the absence of sight and sound. It is so much more than the sum of these two parts. It is better described as “information-gathering disability,” rather than, “He can’t hear and can’t see.”

Even with the collaboration between a teacher of the Deaf (TOD) and a teacher of the Visually Impaired (TVI), the duo would still miss the practical intervention, educational and communication needs of a child who is DeafBlind. Yes, the DeafBlind child’s hearing etiology and listening aids may be the same as a child who is only Deaf or Hard of Hearing; and the same child’s vision etiology and visual correction, if any, may be the same as a child who is blind or visually impaired. The obvious similarities with blind children and deaf children end where the combined impact of DeafBlindness is considered. DeafBlindness is its own separate disability. That’s why there needs to be a certified Teacher of the DeafBlind involved to provide expert guidance to the child’s educational team through the DeafBlind “overlap” of the Venn diagram of the deaf circle and the blind circle.

After my youngest son was born in Maryland, people remarked to me that half the battle was won because we were fluent in American Sign Language. My husband and I quickly learned that knowing sign language was not even close to half the battle and maybe just a very small single-digit percentage of it.

We started county early intervention services when Orion was 3 months old. The interdisciplinary early intervention team of a TOD, a TVI, physical therapist, occupational therapist and audiologist were helpful, but they really shone when they could grow on the support and constructive feedback from a DeafBlind specialist from our state DeafBlind project! I always looked forward to that DeafBlind specialist’s monthly visits because we would get our DeafBlind-specific questions finally answered and learn additional strategies to help our son develop physically and cognitively. Ideally, the Deafblind specialist would be there every single home visit but she had the whole state to serve.

Orion started attending school at Texas School for the Deaf after we moved to Austin when he was 2 years old. His teacher, originally trained as a Teacher of the Deaf, started taking workshops and online courses in DeafBlindness. The difference she was making with Orion over the next few years was constantly growing. This was because her efforts were focused on DeafBlindness and not on adding more blind or visually impaired-specific training to her resume. She has since moved onto new opportunities but her heart has “DeafBlind kids” stamped on it and she is still in touch with us.

Now Orion is almost done with his first year at Texas School for the Blind and Visually Impaired (TSBVI) as a 6 year-old. My husband and I felt the school year started off well because Orion was picking up the routines, figuring out the classroom and getting to know at his own DeafBlind pace his teacher, teacher aide and whatever IEP service provider was in the room to give services. Everyone in the classroom were good at what they do- interacting with Deafblind kids with Deafblind intervention strategies.

I have observed and inquired various TSBVI personnel their source of DeafBlind know-how by learning on the job right there on campus over the years, they’ve attended workshops on various topics that applies to DeafBlindness and Active Learning, presentations and demonstrations by DeafBlind experts from around the world, and the enriching guidance of the personnel in the Texas DeafBlind Outreach department is right there on campus, too. Orion’s classroom teacher is also mentored by a Teacher of the DeafBlind who participated 5 years ago in TSBVI's pilot program training future TDBs. This TDB’s office is just a few doors down the hallway from Orion’s classroom.

TSBVI clearly encourages and nurtures the interactive growth of DeafBlind skills and knowledge. We need to make studying to become a certified Teacher of the DeafBlind available as a professional goal on the state level. This way Orion’s school age DeafBlind counterparts, statewide, can benefit from the same level of expectations and proficiency.

Orion has been making tremendous progress this past year, there’s nothing magical about it. It’s DeafBlind strategies being used appropriately, thus our son Orion is thriving in his own DeafBlind way.


Sincerely,

Heather Lightfoot Withrow
Austin, Texas

Sunday, April 30, 2017

A Child's Thoughts In Favor of Texas Senate Bill 354, the Lead-K Bill

Today, my daughter Anastasia wrote a paragraph of her thoughts on Deaf and Hard of Hearing children being language-ready for kindergarten, in favor of Texas Senate Bill 354 of the 85th Legislative Session, also known as the Lead-K Bill.  The caption for this bill is "Relating to language acquisition for children less than eight years of age who are deaf or hard of hearing." This bill was filed by Senator Kirk Watson who represents most of Travis County (where Austin is) and all of neighboring Bastrop County.

I'd told her that this particular bill, that we had a conversation about earlier this month, was going to have a hearing happening on it this coming Tuesday morning, May 2nd. She wanted to go but I told her she's going to school and she could write something that I could turn in for her.

Here it is, all in her own words!

Deaf and hard of hearing children shouldn’t be denied confirmation of a proper language. If you don’t agree, look at this as if there were no spoken English test. Your hearing child would have to know ASL to have a ready language for kindergarten. Your child would have to know a language they wouldn’t normally use. That is how it is for deaf and hard of hearing kids. 
Sincerely,

Anastasia Withrow
A hearing 11 year-old from a Deaf family
(location omitted)

Parents' note: Hearing children (under 18 years old) of Deaf adults are known in the Deaf community as KODAs (Kid of Deaf Adults).

Saturday, March 4, 2017

Pearls of Touch

My muses for this are from two key sources: my DeafBlind, ProTactile-using (and PT inspiring) friends Hayley Broadway and Sarah Morrison, and my 6+ years of wanting accessible, yet natural feeling, interaction and information for my DeafBlind 6 year-old son Orion. These thoughts were jogged while preparing for Hayley and Sarah’s much-anticipated ProTactile presentation at the 2017 Texas DeafBlind Symposium on 3/4/2017.

The comfort of touch.
Photo credit: Anastasia Withrow
Image description: A woman with faint colors of lilac and teal in her hair, on the left, embraces her white haired DeafBlind 6 year old son on the right. He is resting his head on her left shoulder, facing away from the camera, his hand is over mom's right index finger. Mom's left hand is holding his upper back and she is looking at horizon somewhere off the right side of the photo.


We’ve known since before Orion was born that touch would be a key part of his life. What we know today was refined, elaborated, practiced and it will continue to develop over time as we learn from our mistakes, discoveries, and Orion’s responses.

Communication can happen at any level ranging from the level of involuntary communication, and then voluntary communication including the simplest basic refusal (such as refusing food or spitting it out) all the way through to abstract languages such as American Sign Language, English, Tagalog, etc. My thoughts on touch grows upon the basis that it is versatile through any level of communication.

Touch for Communication

Disclaimer: I’m a Deaf mom who loves any topic regarding congenitally DeafBlind individuals provided by presenters, DeafBlind-related specialists, and therapists in person or via articles and videos. For the sake of categorizing types of touch in my thoughts here, there are two— direct contact and indirect contact.

Direct contact

Constantly in skin to skin contact: any part of your body to any part of his body, in any situation (floor, bed, highchair, bathtub). Touch is not only done by your fingers but any part of the great skin organ we have.

When you greet Orion, we welcome you to:
1) Touch his knee, elbow or upper arm.
2a) Orion will put his hand on where he knows your hand is, or
2b) From his elbow, glide your fingers up to his hand.
3) Sign “Hi”. If he still holds on to feel what you’re doing, quickly add Orion’s name sign to say “Hi, Orion”, and then “Me” and your name sign.

Note: if Orion withdraws contact during any step, that is OK. He knows you/someone is there. Do not go directly to his face, chest or palm of his hands without greeting/touching him in the first place. Any new comments or actions, you touch Orion the same way as you greet him (step #1 and #2 above).

Staying in contact is providing constant feedback to Orion on your actions. Another benefit is that it’s less startling to the Deafblind child is tapping or prompting him with the same hand or body part that’s already in contact. Moving yourself or an object while in contact informs him where you/it ends up.

Tip: If he pushes you away, let him. Follow/accept where he puts your hand and stay there for a while and then go back and touch him. If he pushes you away again, accept and stay there. (Object permanence.) Orion does check and see if you’re still there even when he requires his own space.

Indirect contact
Other ways to indirectly inform him that you’re there if not directly touching him is through your vibrations, movement, scent and movement of air.

Some examples are sitting on the bench with him, bed, stroller, wood floor, etc. There’s no need to tiptoe around because its beneficial to be noisy or create vibrations because your DeafBlind child will know something’s up. When Orion was a baby, he’d lounge on a nice setup on the wood floor, you can feel when people walk through the room and approach you. We would touch the frame of his stroller or the edge of the playpen before touching Orion’s legs and arms because this alerts him that someone is near and perhaps approaching him.

Orion loves our bed maybe a bit too much. When I get up and go to the other side of the bed, instead of just walking around and re-touching the bed, I suggest you get up, keep your hands on the mattress- drum it, push it with your fingers, anything, including bumping your leg against the bed frame wherever you are— be a klutz— until you go to the other side of the bed, Orion will have observed exactly where you were, went and are now and will not be startled when you are in contact with him again. 

Touch for Information

Touch is not just for communication, it overlaps with information/observation uses, too. If nobody touched Orion, or any other DeafBlind child, while doing their own errands or activities, Orion/they may assume people just sit or lay around all day so he will do just that. He will have received misleading information even with the absence of touch!

Another touch information example is bringing Orion to the refrigerator to get the milk jug out, taking the top off, pouring it in his bottle, putting the bottle top back on, putting the milk jug cap back on and into the fridge and giving him the bottle to enjoy. This was not easy to do, and I recommend two people working together for this one but when this is done, Orion gets input to build up concepts about the things, people and activities in his environment.

We encourage nurses and doctors to let Orion feel the medical tools first before using them on him. Tools, including utensils, bottles are concrete, self-explanatory objects that Orion knows about. We can use these objects as object symbols when we’re not currently in the situation, such as letting him know we’re going to the doctor by showing him a spare stethoscope.

Creating habits and a lifestyle

If habit is a comfortable bed that’s hard to get out of, then touch communication is a bed I wouldn’t even try to get out of.

When this is an effort that you think of to do every day, every time, it has a chance to become a habit and then a lifestyle. It would be even better as a family, team or community lifestyle. Orion is a naturally happy boy, he is even more content and quick to play when we’re in touch with him.

This is something anybody can do, family members, teachers, bus drivers, doctors and friends can share of themselves through touch. Anyone. Abstract language is not required for touch communication and information.


————————————————————————
Related takeaways and my spin-off thoughts from Friday (3/3) enlightening general session presentations at the 2017 Texas DeafBlind Symposium. (Prior to the ProTactile presentation.)

  • DeafBlind strategies and ProTactile do connect with each other like the two circles in a Venn diagram. What I share here is in that overlap.
  • Your emotions definitely show though touch. Consider the calmness of contentment, tension of frustration/anger and the animation of excitement. 
  • DeafBlind autonomy for me also includes respecting the individual’s hands, no matter their age. We’ve almost always avoided doing hand OVER hand with Orion… we entice, tempt him find ways for curiosity to take over and he put his hands on ours rather than forcing the issue. When we did try hand-over-hand it did not work out anyway, he would successfully pull his hands away. He will not have any of it- of someone controlling his hands. Exceptions are asking for permission from a DeafBlind individual who understands the request and grants permission.
  • #DeafBlindKids. I mention “kids” because all kids are kids first. With the complex and fluid interaction of needs, health, external situations, action/responses and strategies for DeafBlind kids, it could become easy to forget the kid part! The new main URL of my blog, “A Mom’s Musings,” is www.OrionTheKid.com. When I get overwhelmed with the growing to-do list of strategies and ideas, I have to pause and ask myself this question: “What can I do with Orion right now?” 
  • ...and of course, I internally answer, “Play.”

Monday, February 20, 2017

Enjoying Eighties Music Via SubPac

Orion's intervener came over yesterday (Sunday) to play with him. It was a very welcome change for me as we've been short on interveners lately. There's only so much I can think of to do and actually do in a day to keep Orion's days rich and nurturing during school breaks, weekends especially long weekends with no school on Friday and Monday, when I'm the only parent in the house (hubby is scouting the Deaflympics venues in Samsun, Turkey at this time*) so it helps to have other minds and hands to help out. 

The photo below was of what I came home to after a quick Starbucks/HEB food run: a happy Orion hugging and moving the SubPac around with his hands and feet. Cyndi Lauper was playing via YouTube on his intervener's iPhone which was connected to the SubPac. Both Orion and his intervener were smiling and having a great time!

Accessibility was helped very much due to labeling the drawer that had Orion's SubPac in it. (Photo shown below.) And serves a great reminder that the SubPac is here and ready to play.  We have not worked this activity into a schedule yet as it's hard to keep the family on a rigid daily schedule, especially on no-school days. For now it's an item to check-off a list of activities Orion enjoys. 

Knowing Orion enjoyed Michael Jackson, his intervener played MJ's "Beat It". I think it's adding up that he enjoys the music of the 80's.  I'll try Tina Turner next... if any of you have suggestions of musicians who have "danceable music" I should share with Orion, let me know! (I know I'll enjoy it, too!)

I think Orion really enjoys the SubPac... and according to his intervener, Cyndi Lauper's song, "Girls Just Want to Have Fun," was playing during this photo.
Description: A smiling, DeafBlind white-haired 6 year old boy is laying on a bed, holding the SubPac perpendicular to his chest. The SubPac is partially hiding Orion's wide smile.


Description: light green masking tape pieces are placed on the bottom drawer of an oak dresser, the first tape reads, "ORION'S DRAWER," and the second tape below it reads, "SUBPAC".
I'm happy Thomas is able to go to Turkey, though, because unfortunately chatter on social media has been giving this richly artistic and beautiful country with many centuries of history a bad rap. Thomas reports that Samsun, in north Turkey on the shores of the Black Sea, looks good and clean, is safe at the level of any other ordinary place in the USA and the world, and the people are friendly! He's excited and ready for the Deaflympics there this summer!

[Edited to add link to DPAN TV News' segment on SubPac: https://www.facebook.com/DPANTVNEWS/videos/546292758896459]

Thursday, December 1, 2016

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.
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.

Tuesday, November 22, 2016

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. 

Wednesday, November 16, 2016

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."