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.
|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.|
|Not gonna touch it, no matter what|
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.
LOVE IS KIND.
LOVE DOES NOT DELIGHT IN EVIL BUT REJOICES WITH THE TRUTH.
We may not enjoy the daily struggle, the ups and downs, but the truth is, love is always worth the cost.
IT ALWAYS PROTECTS, ALWAYS TRUSTS...
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.|
...ALWAYS HOPES, ALWAYS PERSEVERES.
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!
|LOOK AT HIS HANDS!!!!!! AND HIS FACE!!!! :D CLOSER EVERY DAY!|