To help my child, I must see him.

I am the parent and support person to my 10 year old son.
He is a non-traditional learner.

Having a Semantic-Pragmatic Language Disorder effects his social understanding of language.

What does that look like on a daily basis? The most complex part of the sensory system, auditory and visual perception receive information at a different rate. In order to "see" and "hear" for thinking in "language" these systems would need to work succinctly.

He learns by an individualized approach; the learning input needs organized to impact "his" learning system. That is different from most educational designs.
We (parents and educators) manually put pictures in for new learning and integrate what is heard to what is seen.

He is very conversational, has a very good memory and loves sharing his life and interests with others, he wants to learn what others like too.
SO what's the big deal? He has Down Syndrome, and the stigma associated with what is culturally expected from the diagnosis leads to a story of different personal meaning.
A story that assigns cultural meaning to his uniqueness, and takes his abilities away.

This practice makes it very difficult to See the Child, the person within.

When learning is organized in sequential ways that give meaning to the adults and how the system rewards them, there is no way for him to integrate the learning.
This means he cannot show what he knows, socially or academically.
Adult systems (and typical systems) would call this the inability to generalize or a memory deficits.
In our effort to develop the learner we insist he learn by the typical sequence. But not all people learn the same way.

It's very disturbing, do we really think we can change the way anyone is hardwired?

Disability is what happens when someone does not get what is needed from the environment. Educators and experts (adults) are granted the right to assign their meaning to my sons uniqueness and take away from his abilities, not only in the eyes of the adults but also in the eyes of his peer group. They say this is to inform us what he needs. I reject these assignments and ask "how can he"?

What if we believed that being a different minded learner meant one needed a different order, and not a program.

Input the learning in order to access the individuals learning bed.
Instead of being disordered, we would agree that the way to develop the individual, is to meet them where they are and develop the concepts needed for a quality of life expected by the opportunity for a Free and Appropriate Public Education.

Concepts that underlie the use of language (semantics)for reading, writing, thinking, viewing, listening, speaking and calculating. The same ways students without a label are educated.

I guess that's my opportunity to change our world, one bite at a time.

Stay tuned, new stories to come.

Behavioral expressions are almost always a symptom of a larger need not being met by the environment.

If we only see the persons distress as a problem, we will treat with behavioral techniques, while not addressing the underlying need.

Without meeting the individuals real need, we have found a solution that is "staff-centered" and not "person-centered", this ultimately does more harm than good.

What if all the testing protocols are prejudice of the individuals "different minded learnedness", and fails to interpret the real need. What problems might we see? Behaviors?

When we see a person in distress, our primary goal should be to try and find out what his or her "unfulfilled" needs are, and adjust the environment to meet them.

Behavior Intervention Plans are tricky for this reason. The individual may appear less disruptive, but are they truly calm, self directed and engaged with purpose and understanding? Have we replaced the behavior with rote compliance, and without meeting the individuals real need (are they robotic and without internal motivation)?

Dr. Ellyn Arwood, author of, Learning with a Visual Brain in an Auditory World, says "real behavior (self directed) requires conceptualization". "Conceptualization comes from understanding of language".

We need to at least identify alternative indicators of well-being regardless of age, cognition or functional limitations to maintain the dignity of our loved ones and be their defenders.

Some suggestions of alternate indicators of well-being are:
Identity: Have a life story that is well known to your peers and learning partners.
Autonomy: Have choices in many aspects of your day.

Let's talk about other possible indicators of well-being.

This is my new mission in life, can you tell?

Changing Behavior is a Process, Step 1

Protecting "private time" for both of my children has been a tricky challenge.

My daughter needs more quite time than my son, and her current mechanism to get it involves fighting on the stairs. This must change.

Her room is located on a separate level from the other rooms of the house.

She is eight and he is ten. He has a cognitive disability diagnosis. They have a habit of problem solving through high drama. I want to refine that.

The question became, how do I create a visual way of understanding to fill the gap caused by my sons under developed temporal system?

The battles were daily, time consuming and nerve racking. There was a process of fear, anger and anxiety. One led to another in a never ending escalating loop. No one was getting what they needed.

Question: So. How can we build success?

Answer: "Story telling" in a language my son understands, using "cartooning", photographs and text to build a scaffold that layers in context for enhanced learning.

Eventual result: more self-regulation, independent thinking and success for both of them.

When we have succeeded both children will have less anxiety and need less support.

It benefits our family unit--everyone wins!

Equipment: Picture, Clock and Bell.

The picture shows the relationship between the current situation and the expected behavior.

It shows the stairs to my daughters room and my son. It shows the passage of time and the bell that my son can ring when she is in her room and he wants to be with her.

Dancing with the Stars and "Splinter Skills"

Dancing with what?

This is one of my regular shows, I even record it with my DVR.
So this week I had it on while doing my house work and could not believe the improvement of the remaining stars.

Then I got to thinking that most of the "Stars" Dance Ability is based on their "facilitator".
It's more than instruction, just look at Kelly Osborne's progress!
Only five weeks ago she was scared to death and in disbelief of her ability.

The instructors remain focused on making the Stars successful, and do this by
using their interest and abilities to develop them into "Dancers".

Professional Dancers and the Television Audience are the judges and the
Stars are promoted and advanced towards the finals over the season.

I wonder how many children with disabilities would benefit from academic programming that allowed them to use their interests and abilities to help them learn to use what they "can do" in meaningful ways, and look good in the eyes of others?

I wonder if they were Reading, Writing and Telling stories in all areas of academic content with an aide or a peer would we hear that it does not matter because they cannot do it by themselves; without an aide or peer.

I wonder if Kelly, Donny or Mia could dance the way they will in the
Dancing with the Stars, Finals, without their "professional partner"?

Unclear or Insufficient Information

My oldest son (9yrs) is social and an oral communicator.
He has a significant speech and language disorder. He also has Developmental Disabilities.
He reads and understands what he reads at a much more effective level than he communicates.
Most of what he says is unclear or gives the listener too little information.

He becomes an "effective communicator" and learns "concepts" (not skills) through relationships.

Relationships address his learning style.

Here is a recent conversation. between he and I:

David: "Om, ingerale"
Me: "Om, ingerale?"
David: "ingerale"
Me: "Mommy does not know what you said." (integrated with sign language to support his understanding)
David: "ingerale" (pointing)
Me: "GINGER ALE?"
David: "yea"
Me: "you want ginger ale?"
David: "Ranjuice"
Me: "You want Orange Juice with Ginger Ale?" (Sign language integrated)
David: "YAH, from Walmart"
Me: "David, your talking about Walmart..............but we were talking about a drink." (sign integrated)
Me: "David, tell Mom you want Ginger Ale with Orange Juice." (sign language integrated)

In this example my goal is to retrain his "Jargon Speech".
I want to keep the conversation going, I avoid questions and use what he says to build understanding between us and indirectly teach him to hear what he says.
I want him to benefit from what he knows and can do.

His goal is to "correct what others think he said".

His goal is not to "stay on topic", because we want him to be successful.

When his sounds and actions are given meaning through relationships, he is successful and shows us what he knows and thinks.

Oh, the Possibilities.

I have often felt that visuals supports help my son with Down Syndrome think and learn.

While attending the Dallas Down Syndrome Guild's Fall Conference, September 2008, I learned to shift from using visuals that make sense to me (and other adults) to making visuals that facilitate his understanding.

The presenters were Lynn Campbell, CCC-SLP and Sidney Crim, CCC-SLP and the session was "Strategies to Improve Reading and Behavior". The theory behind the "intervention" is Semantic Language Learning.

I started using the strategies immediately, and over the past year he has improved his "use" of language by learning concepts that underlie functional reading, writing, thinking, viewing, listening, speaking, and calculating.

First, we "wrote what he said" (scribing with a white board); it helps him hear what he says.
Then, we implemented the use of "cartoons", with "thought" and "speech bubbles" to define himself and others in a specific space and time.
Third, we conversed about pictures. The types of pictures needed were pictures of people in activities he could relate to.
He was learning to "see" people in relationship to himself in a variety of events pictured.
And after he learned to "converse" (no questions) about these drawings and pictures, we started "writing" "text to self statements" (agent, action, objects).
Then adding to the text, an action or description word.

I started to see, the layers for learning oppurtunities are endless.
He needs a variety of relationship understanding to be successful.

From conversing and scribing we moved onto "drawing" the "visual symbol" associated with
content words.

Today he is learning,
*color coding and self correcting strategies in word morphology games and activities.
*to work independently and in peer groups with a variety of visual supports that facilitate his neurological development.
*to complete statements about text read.

No matter where my son is placed, he needs visual supports. Learning in a segregated environment is not any easier and learning life skills does not facilitate his functional learning.

I believe we can learn so much about ourselves from these lifelong relationships with our children. I hope you will join me and share.