Opportunity is Knocking

Have you ever thought to have your non-verbal child join the children’s choir at church?  How about enrolling him in a homeschooling community that has the word “Conversations” as part of its name?  Would you dare enlist your non-verbal young adult son to co-present to students enrolled in a college-level class?  Throughout the years, I have sought out opportunities to include my son in activities in which he expressed interest or that were learning experiences for him, for me, or for others.  Perhaps our experiences will spark an idea for you and your child/adolescent to pursue.

Despite his apraxia of speech and related dysarthria, my son loved to “sing” in church.  Though he couldn’t enunciate the words, he sang with a joyful heart and, recognizing the melody, adjusted his vocal sounds accordingly.  So to me, the next logical step was to ask the choir director, Mrs. Harper, if my son could join the “cherub” choir.  Neither of us knew quite how that was going to work, but Mrs. Harper welcomed my son with enthusiasm and love.  The cherub choir met weekly to learn rhythms, sing solfeggio patterns (do-re-mi — as Julie Andrews’ character taught the children in The Sound of Music), and of course to practice the songs for Sunday’s service.  “The kids got a lot out of it, with Nick being there,” Mrs. Harper remarked as we reminisced about the experience.  She continued, “Emily (one of the other children in the choir) suggested they pass a globe around their circle as they sang He’s Got the Whole World in His Hands.  There was some concern, (because of my son’s compromised balance) whether he would be able to accept and pass the globe without falling down,” she recalled.  “But he did it!”  Mrs. Harper thoughtfully summed it up, “Some things you remember for the rest of your life.”

That early opportunity to participate in a natural community came about because we paid attention to what my son could do and loved doing.  I cracked open the door of opportunity by recognizing it and asking others to try.  Mrs. Harper, the choir director, opened the door wider and welcomed him into the group.  And little Emily threw the door wide open by seeing the possibilities for her peer to physically participate in a successful and meaningful way.  And, as Mrs. Harper noted, it turns out my “non-verbal” son has perfect pitch.  Imagine that!

Several years later, we had begun homeschooling and found a community called Classical Conversations that met once a week to learn together.  It is based on the classical model of education, or trivium, and the first part involves memorizing and reciting facts.  One might think that would be incredibly difficult for a child with memory and speech impairments.  But as I considered this educational opportunity, I knew it could work for my son because much of the material is memorized with song!  Surely that would help him.  He had also been using an Augmentative and Alternative Communication (AAC) device with speech-generating software.  We programmed his Dynavox (and later iPad) with all of the facts the children had to memorize and he “recited” his answers by activating the appropriate button on the device.  He had to navigate to the correct page, sometimes with assistance, and select the correct answer.  The other children often wanted him on their team when memory games were played because he knew all the answers!

Whether it be public school or home school, what educational opportunities await your non-verbal student?  Consider opening the doors that allow him to share something in show-and-tell, give a book report, share what he knows in class, or deliver a research presentation at a science fair.  This can be done with AAC using a speech-generating device (SGD), picture boards, sign language, or hands-on activities (e.g. my son used a dry-erase board and cut-out words to diagram sentences).

By participating in natural communities and seeing the opportunities they present for your child to experience success, others will get to know your child and your family.  Before you know it, you will both become “experts” of sorts and people might just start coming to you for advice, ideas, and knowledge.  A few years ago, I was invited by a college professor to be part of a panel of parents who were actively involved in the education of their children with special needs.  The class was Introduction to Special Education, and we gave individual presentations and then opened it up for questions from her students.  The professor also asked if my son would take part on the panel.  Again, he used his SGD to tell about himself and to answer questions from the college students.  My son was so well-received by the class that one of the students even “photo-bombed” him when the professor took his picture.  This was another positive experience for my son — and for me.

Each child with special needs is unique, as is the family.  Our families face both similar and different challenges and frustrations.  But you and your child can experience your own successes – if you look for the chance to overcome or work around those challenges; focus on what your child can do; and seek out activities, communities and people that will support your endeavors.

Opportunity is knocking.  It’s time to fling the door wide open.

(This blog post originally appeared as a guest blog on eparent.com on January 9, 2017)

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The First Step: Presume Competence

Why?

Even if your non-verbal child has been tested by every professional under the sun, it is my opinion that none of us know the extent of what the child is thinking, what he/she understands or what he/she is capable of when faced with new learning opportunities or challenges.  When you presume competence, you automatically look for positive responses.

The Eyes Are Expressive – And Have a Direct Link to the Brain

In my last post, How Do I Climb this Mountain?, I shared others’ observations of my son and how they just “knew” he had a lot going on inside his head.

“What makes you say that?” I would ask.

“You can see it in his eyes,” was the usual reply.  They saw interest, excitement and curiosity.

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The eyes are expressive and there are volumes of research about facial expressions, body language and non-verbal communication.  But did you know the eyes have a direct link to the brain – that part of the eye is, in fact, brain tissue?  Read about the science behind this here.

I learned about the eye/brain connection and vision, including eye movements, when I was a Certified Optometric Vision Therapist.  Eye movements require fine motor control – those eye muscles are really small!  But I think that even someone who has poor fine motor control (writing, hand-grip, eye movements, etc.) can express interest, enthusiasm, anger and fatigue via their eye movements, pupil constriction/dilation or with the facial muscles around the eyes that control eyebrows, for example.

But the others who remarked about my son were not trained in vision therapy.  It seemed intuitive to them as they learned their own way to communicate with him and understand his non-verbal language. And they were looking at his eyes and facial expressions to glean any attempt at communication from him in their effort to understand him.

If Grandma or someone outside of your family can recognize the potential for competence, so can you.

Pay Attention

It takes time to get to know your own child, especially when he has complex communication needs.  You have to try lots of approaches AND pay attention to his responses –

What do his eyes do?

Where is he looking?

What does his body language indicate?

Does he seem interested at first, but then seems to lose interest or not respond positively?

Maybe he’s fatigued.  Maybe he’s reached his comprehension limit – for now.  Maybe he is just bored with the activity or subject matter.  Even that can be hard to determine.  But don’t let it stop you from trying.  As you expose your child to new ideas, new challenges and new adventures, you will begin to pick up on the nuances of his methods of communication.

That is your starting point.  Then grow him from there.

As Dr. John Townsend remarked in EntreLeadership Podcast #170 “There’s always this sweet spot, always always always, where you find out this person can do this much for themself, then they need external help.”  He goes on to say, “They’ve got to have somebody that when they get to…. the point of being uncomfortable, and they get to the point of ‘I can’t,’ and that ‘I can’t‘ is not anything manipulative like ‘Well, I don’t want to.’ ‘I really can’t. I’ve done everything I can, I’m sweatin’, I’m trying hard.‘ That’s when they do need someone to come along and say, ‘Ok.  I’ll take you the rest of the way.’  And that’s how they win.”

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In my next blog post, I will talk about the importance of finding a good Speech-Language Pathologist to partner with as you look for ways to expand the availability of communication methods for your child.