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 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.”