Meaningful Tactile Information for Orion (VIDEO)

It's been a while since I last blogged! I've been so busy juggling family and graduate school, that I've been sitting on this video, a vlog, a video log, that I created in August. I finally captioned it! So since in my eyes, it is now accessible, I will share it.

It's about touch information for Orion, how we get certain information to Orion over a small distance or directly in touch.  This video was created as a spin-off of a blog post on the same topic that I published earlier this year, "Pearls of Touch". I've included two video clip examples of sharing tactile information with Orion.

It's 14 minutes, closed captioned (click on the "cc" icon if you need it), and enjoy.

Adding Intervener Services to the list of IEP Related Services

Public comment submitted to the U.S. Department of Education on August 10, 2017, to www.regulations.gov on ED-2017-OS-0074, comment period deadline is August 21, 2017.

"The U.S. Department of Education is inviting comments regarding their regulations.  The June 22, 2017 Federal Register contains a request for comments, In accordance with Executive Order 13777, ‘‘Enforcing the Regulatory Reform Agenda", signed by President Trump February 24, 2017.  The Department of Education is now seeking input on regulations that "may be appropriate for repeal, replacement, or modification."  This is our opportunity to send in comments to modify the Related Services regulation by adding Intervener Services to that list (“CFR Title 34, Subtitle III, Chapter III, Part 300, Subpart A, §300.34 Related Service)."  Source: personal email.

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I request a modification of the regulations to include Intervener Services on the list of Related Services.  Trained interveners are difference-makers for DeafBlind children no matter what the children's ages are or skills and language they have. They are able to adapt to work WITH the child and not FOR the child, they seek out opportunities for the child to access and make connections with things, people and the environment, they are responsible for the child's social and emotional development.  

Yes, education of DeafBlind children is a very young field. Even with early DeafBlind people, Laura Bridgman (b. 1829) and Helen Keller (b. 1880) (www.perkins.org), it is still new compared to public education and Deaf Education. In the short time this field has grown, knowledge and skills, for which there are currently Council for Exceptional Children standards (CEC link below), in interveners have proven time and time again it is a best practice in the education of DeafBlind children.  

My 7 year-old DeafBlind son, Orion, is one of these students fortunate to have been assigned interveners over the years, his first one was when he was 3 years old.  It was at that school and the first time for Orion, the IEP team voluntarily listed intervener services, which he received 1875 minutes of per week, under Related Services in his IEP document.  With the support of personnel skilled and experienced with DeafBlind children, including interveners, Orion is walking more, drinking via straw, making choices when offered, making progress with requesting things or actions of other people. Most important of all, Orion is happier on these school days where he can understand what's happening and has been "heard" by competent people who understand him.

Unfortunately this is not true for all DeafBlind children during the critical early years of their life. Caregivers, one-on-one aides, nurses, volunteers who are not trained or experienced in this field do not reach the level of efficiency in schools that interveners bring.  

The good news is that there are training resources available, some are online resources and online training programs through a few universities.  One of them is a 27-module online resource developed by the National Center on DeafBlindness, funded by the Office of Special Education Programs called Open Hands, Open Access Intervener Modules (OHOA).  There is national intervener certification available through NICE (National Intervener Certification E-Portfolio) that is based on the CEC intervener skills and knowledge standards.

By modifying the Related Services list to include Intervener Services, it opens the door to educate, empower and enable our early intervention, K-12 professionals and particularly DeafBlind children to successfully access education currently offered to all the children in our country.

References

Open Hands, Open Access Intervener Modules. National Center on DeafBlindness. http://moodle.nationaldb.org. Retrieved online August 2017.

Specialty Set: Special Education Paraeducator Intervener for Individuals With Deafblindness (PDBI). Council for Exceptional Children. https://cec.sped.org/~/media/Files/Standards/Paraeducator%20Sets/Specialty%20Set%20%20%20Special%20Education%20Paraeducator%20Intervener%20for%20Individuals%20With%20Deafblindness%20PDBI.pdf. Retrieved online August 2017.

What is NICE? National Center on DeafBlindness. https://nationaldb.org/pages/show/national-intervener-certification-e-portfolio-nice/what-is-nice. Retrieved online August 2017.

Awesome Orion Doings Without Words (Running & Pediasure Request)

Orion just did something awesome today and something completely different but equally awesome the other day (Sunday). What was the same: there wasn't a camera running to capture the moment. I didn't even try to get him to do it again, like we would ask of a performing monkey.  (I've done this before, yes, but I want to focus on letting him to know I saw it. That very one time counted, Orion! When we ask kids to repeat something we think they didn't do or so that we can capture it on video, we may not appear receptive or even bright at all to our own kids!)

Running Tuesday 

(Today) as posted on my personal Facebook wall:

"After happily meeting grandpa's best friend, crawling onto his lap for a snuggle, Orion ran down the hallway with lots of support from me but his legs were running! #DeafBlindKids #CanTheCant"

Orion's big brother and sister saw it all, and shared in the excitement as they walked quickly alongside us! Orion was laughing out loud as he ran (with me).

Orion "ran" once before with me, just once. Today was faster and a longer distance at around 15 meters (45 feet).  

He was really giggly during our visit with grandpa's friend, H, at a rehab place. I carried him to the lobby when we arrived, put him down to walk toward the friend's room. Orion, as a visitor, was just one of the people in this place practicing to walk in the hallways, among other things the rehab residents need to work on. He didn't want to walk all the way so I plucked him up again. Orion found H's wheelchair, the wheel, and H's hand and proceeded to climb up on H's lap!  Orion was just at home with H, snuggling up on him.  

While everyone else chatted with H, Orion provided ample laughter in the background as he stood or climbed up me with his feet and was flipped back down to standing position (his favorite).

Pediasure Sunday

We were sitting at the kitchen table after dinner and dessert at my parents' home in Washington state.  I had already unscrewed the cap of the Pediasure and poured it into Orion's hard-spouted sippy cup with him. He was feeling my hands on the Pediasure bottle and his sippy bottle. He put his fingers in the pouring stream and brought his fingers to his mouth to taste. This was an ordinary everyday thing for us.

Now here is the part I saw Orion's determination and exciting communication efforts:

Obviously finished with the sippy cup, he grabbed my hand and put it on the sippy cup.  I replied via tactile ASL, "Yes. Milk. Wait."

I took the sippy cup and filled it with 2% milk, since we usually just give him one bottle of Pediasure a day, and gave it back to Orion.  He took a swig, put the sippy cup down on the table, grabbed the empty Pediasure bottle that was still on the table, took my hand and put it on the Pediasure bottle!  Yes!  But just to make sure of Orion's intent, I gave him his sippy cup again. He drank it and repeated the same thing- grabbed my hand and put the Pediasure bottle in it. No mistake about that! I replied to him,"Yes, yes! Wait."

I scrambled to the garage for another unopened Pediasure bottle, emptied the sippy cup and brought it to the table. Orion and I did the hand-under-hand, "Do With, Not For" way of pouring the Pediasure into Orion's sippy cup whilst he dipped and tasted the drink as I put the lid back on. He drank it all contentedly and had no further requests for me.

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

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).

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.


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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.”

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]