Friday, November 08, 2013

Overcoming Tactile Aversion in Deaf-Blindness

So. Before Mason was born if I heard the term "deaf-blind" I immediately thought of Helen Keller. No sight. No sound. No least until Anne Sullivan came into her life and poured cold, fresh water onto her hand, followed immediately by signing "water" there. This simple but brilliant act of tactile connection unleashed understanding of communication for the first time for Helen.

As a child with a mild vision issue myself (lazy eye), Helen was my hero... I remember thinking it was torture just to wear an eye patch; how could one person overcome so much darkness with such grace? It seemed like the key to everything for her was the blessing of touch...using her hands to discover the world around her. She even used her hands on people's faces to understand them as their lips moved while talking. I did book reports on her, wanted to be an eye doctor when I grew up (until I realized I was too faint of heart for that), invented a "globe for the blind" for a 4th grade project that featured different textures of fabric to distinguish locations by touch, and wrote poetry with titles like "Ode to Opthamologists" in middle school. I even took sign language in high school and every chance I could at camps and went through the school of communication in college. Call it coincidence, or foreshadowing (I am an English major) or whatever you want. Looking back, I call it the touch of God's hand gently shaping and nudging my heart in helpful directions. But I still considered myself pretty unprepared for being told one day that my own child is "deaf-blind'(which doesn't mean he is totally deaf or totally blind; just that he has significant impairments in both to such an extent that communication is far more difficult than if he were impaired only in one).

I felt unprepared, NOT because I thought being deaf-blind in and of itself is a hopeless cause. After all, we could just teach him tactile sign if he can't hear or see well enough to understand ASL, right? And we'll teach him Braille to read. And use an Ipad app or speech device so he can talk with others. You know, all the logical stuff that people do who have deaf-blindness today.

Um. Not so fast. Because Mason isn't just deaf-blind...his bigger disability, in my opinion, is a long-standing, profound aversion to using his hands.

boy with tactile aversion sensory defensiveness
Mason is not upset by the hands on his legs. He is upset by having to touch an unpleasant-to-him surface in order to sit up.
Helen Keller used her hands for receive speech, to make sense of her world. I thought I was unprepared for Mason because I asked myself, how can Mason learn about his world if he cannot hear or see well, but also refuses to allow information in by touch, his most valuable asset, because his nervous system has been so ravaged by infection, seizures, propioception dysfunction, med and med withdrawal, surgery pain, reflux, blood tests and IVs that he fears touching and manipulating a toy worse than not knowing anything about it. Because of his aversion to touch (not the touch of others, but using his own hands to touch objects, despite a completely functional hand grip and 3 years worth of occupational therapy/desensitizing and a perfectly capable mind that is able to figure out creative solutions to avoid using his hands, like using his head or forearm to activate a toy or switch), Mason has been unable to hold a spoon, play with toys in the traditional sense, push up on his hands, indicate wants or needs by pictures on an Ipad (he won't touch pictures and he may not be able to see them clearly enough to make sense of them even if he would touch them), or "experience" much of the world enough to understand the meaning of many words. The aversion extends to his feet and he will not even let his feet touch the floor without them being strapped down or covered. So even his developmental delay (because he has to touch either the floor to sit, for example, or reach out and hang on to something to pull himself up to stand) is rooted deeply in tactile aversion.
boy with tactile defensiveness
Not gonna touch it, no matter what
We were told that because of his tactile defensiveness, Braille is not really an "option" for Mason right now. He may have enough vision to see giant print letters; it's too soon to say. Mason communicates by body language, a few vowel sounds and a few signs he made up that we try to figure out. We are really trying to stretch our imaginations as for ways to help him communicate because he has clear intent to do so...we are just a little slow :/

We're heard some people with blindness use such creative means as echolocation to navigate their communities; surely there must be a creative way to communicate with our son who has severe vision and hearing loss, to either break down his walls of defensiveness where the usual strategies have failed, or circumvent the hands somehow for exploration. We know there are head switches and switches for about any body part you can imagine, but most of these systems depend on good vision to make choices among photos. And he doesn't want to learn sign yet. He doesn't like people to sign things into his hands. He only wants to clap your hands together for you. But he gets so frustrated in clapping our hands that we wonder if perhaps he is trying to teach us some kind of Morse code using vibration. ;) Hmm. We aren't giving up. Although Mason can use some combination of signs, vocalizations and eye gaze to get his basic needs met as he does already, we want to truly understand Mason's voice and help him interact with his friends because we know he is in there. He is so social...we want him to connect on a deeper level with the others who love him so much.

Love him so much.

You know, no matter what method Mason ends up using to communicate, I think the biggest key to overcoming severe tactile aversion in a child with deaf-blindness is just that--LOVE, and no amount of "therapy" will top it. "If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal."

LOVE, after all, is PATIENT. 

This journey won't be finished overnight; it is a slow process where each day of loving gently brings small victories like small hands for the first time reaching out to "know" his best friend.

I once heard it said that kindness is the language which the deaf can hear and the blind can see.

We can't compare our child's successes and failures to other children. We are grateful for what our child can do and gracious in how we treat others no matter how far ahead or behind in the journey.



 We may not enjoy the daily struggle, the ups and downs, but the truth is, love is always worth the cost.

Every ounce of trust built on love can replace a pound of fear.
Soft "crinkly pillow" made by Grammy so he has something familiar and "safe" to learn to grasp.

Those beautiful techniques of HAND UNDER HAND, where he puts his hands ON top of our hands as we explore new textures, and guiding at the elbow to let him explore himself, have opened so many new doors for him, and us, in perseverance.

LOVE NEVER FAILS! (1 Cor. 13:4-8)
Love is unconditional. And it always comes through when everything else fails!


Mason's Mix

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