HELP ME - I'M IN HERE!

THOMAS’ STORY  (What I imagine he would have said.)

I feel like a nobody.  I am a nothing.  People are all around me but they don’t see me.  Only one person seems to know that I am more than my disability.  Tammy always says, “Hello, Thomas, how are you today?” and she waits for me to answer.  No, I don’t speak out loud but I do look at her and smile.  When Tammy is around I feel like I am somebody.

The others take care of me but don’t seem to understand that I need more than just being cared for.  I want to do things, I want to be involved, I want to learn.  The computer is important to me.  I’m smart – did you know that?  I listen to what you say to each other.  I follow along with the words as Tammy reads to me. 

Being in this place is boring and lonely.  My family is so far away and don’t visit very often.  I want to tell them to take me out of here but they don’t understand.  They’re sad to see me here but don’t know what else to do.  I have no friends.  I have no way to talk with others.  I have no way to say, “Let’s play cards or play games on the computer.”  I have no choice in what I do.

I want to scream, “I’m in here!  Someone help me!”  I can’t speak. But I can use the computer.  I practice and practice and teach myself how to type words.

Now I can say, “I am in here.  Now I have a voice.”

HELP ME - I'M IN HERE!

or

NOW I HAVE A VOICE


When you give a child the tools to express himself you may be surprised 
how far he can go and how much he can share.

Connie, Alan and Thomas

Tammy, an acquaintance of mine, worked with special needs teens and adults in a facility in Victoria, BC.  Tammy interacted with the clients, telling them about her family, sharing photos, reading stories.  She would let Thomas play on the computer. Some of her co-workers didn’t understand why she was doing this.¹  They thought that she was wasting her time, “Connie doesn’t know what you’re talking about.  Why do you bother?” or “Alan doesn’t understand what you are reading.”  By watching carefully though, they started to see the reactions of the clients.

Tammy didn’t have any specific training but she could see how Connie responded to her. Connie vocalized and almost bounced in her wheelchair when she saw Tammy with the photo albums. She looked directly at the photo albums and laughed. Alan may not have understood what Tammy was reading but he smiled and leaned toward her as she read. It was all about connection and interaction.  Thomas was focused and alert when he was using the computer even though nothing he did on it made sense to anyone else.

Connie, Alan and Thomas were being acknowledged and shown some interest.  They had a friend in Tammy.

When the de-institutionalization of person with disabilities was established, many of the clients were moved to group homes.  Tammy had to move on to a different job.  Connie, Alan and Thomas moved to various group homes. 

A few years later, Tammy met up with one of her previous co-workers.  She passed on some amazing news about Thomas.  At his group home, he kept on wheeling to the computer to use the keyboard.  One of his caregivers went over to see what he was doing.  By watching and listening to everyone around him, Thomas had taught himself to read, spell and use the keyboard.  On the screen he had typed, “I am in here, someone help me.”

When I heard this story, my heart went out to Thomas.  But this is not a sad story. This is a story about determination, drive and inspiration.  

1.  In the past, it was common practice to label people with developmental disabilities as "mentally retarded" or "mentally handicapped" and place them in institutions. The philosophies of care and treatment changed over the decades, from custodial care and confinement to hospital or medical care to education and development.  As a result, attitudes towards people with developmental disabilities have changed dramatically over the last few decades. 

HOW ABOUT LISTENING TO ME?

or

NO ONE CAN WORK WITHOUT TOOLS

One of my most memorable experiences (or do I say this with each story?) was at a high school in Maple Ridge, BC.  I was lucky enough to be assigned to Matt, a grade eight boy who had limited muscle control and was not able to speak.  The staff at his elementary school and his parents had sent all his communication materials and equipment that Matt had used.  There were PCS, switches and recording devices.  Matt used a PCS symbol schedule previously so we decided to continue.

When Matt came in to the classroom in the morning, he and I would look at the activity symbols one at a time and then I would put it on the chart.  The first time we did it he focused on the symbols and smiled.  The next day when I wheeled him to the chart, he was actually shaking with excitement. When I saw his beaming face and his excitement I knew I was right where I needed to be. 

Being able to open the world of communication to Matt meant almost as much to me as it did to him.  It made so much sense and I was enthused to do even more.  Sometimes the ideas flowed so quickly that I had to remind myself to take it step by step.  The logical next step was to use his Big Mack to give Matt the ability to tell his parents what he did during the day. ^{1 footnote}

I felt as though I was the student and Matt was the teacher.  His enthusiasm to communicate and connect with others energized me.  I learned so much about the value and need to be able to communicate.  But even more important was seeing how powerful Matt felt when he could relate and connect with people.  This is one of many lessons that taught me about the power of communication.

When you give a child the tools to express himself you may be surprised how far he can go and how much he can share.

1.  For more ideas on using voice output equipment read the next blog.

We don’t know what someone is thinking 

unless we provide a way for them to let us know.  

NAUGHTY OR NOT

or

PUBERTY AND BEYOND

Nina’s Story Part 2 

          Ah, the lucky people who have the pleasure of interacting with a pubescent girl or someone with PMS.  All kidding aside, when you have a combination of hormones and no ability to communicate, you are sitting on a time bomb.  Nina’s seizures and difficulty coping escalated in grade 5.  We talked about these changes at a team meeting. Were there any triggers that happened just before the seizures?  Was there a pattern to the seizures or the inability to cope? 

It was time for more observation and recording.   Three different charts were used to see if there were any links.  We recorded Nina’s menstrual cycle, the seizures, and what was happening before each seizure. (We may have also recorded the number of times she had difficulty coping.)  By drawing charts on transparencies, we were able to overlap them and see any connection. 

From what I recall (it’s been over 20 years after all), there was a connection between Nina’s menstrual cycle and the number of seizures. By knowing her cycle we were able to ease her work at the times she would be more likely to have increased seizure activity.

   

        Those nasty hormones can mix up any brain –girls, boys, adults.

A Side Note:  One woman I was tutoring was pregnant.  We were reviewing math and had to go back to grade 8 math.   One day she would remember how to do simple algebra and the next day it made no sense to her.  After delivery she had no problems at all! 

GREAT MINDS DO NOT THINK ALIKE

or

CAN I TRUST YOU?

I’ve heard that it’s a woman’s prerogative to change her mind.  I like to use that excuse several times a day with my husband.  We have a good laugh about it.  But I never use it when I am with a person who is affected by Autism Spectrum Disorder.  Over the years (and recently) I have experienced different ways that the brain processes information.  Learning each student’s thought processes has been vital in connecting with them.

One student needs time to process what I am asking or telling him.  I learned not to repeat myself as though he wasn’t listening to me.  Suddenly cutting an activity short could cause extreme anxiety in another student.  Jokes may make no sense to someone who thinks literally.  It takes time to get to know someone and listening to input from parents helped to open my own mind to the idiosyncrasies which, of course, we all have.

Brady’s Story

Brady is a high school student I have been tutoring for 4 years.  He has taught me how to be quiet and patient while I wait for a response.    His mother, Lena, had to remind me often that Brady needed time to process information.  She showed me how using sticky-notes helped to keep Brady focused and more relaxed.  Finally, I understood what this “processing” was all about.

 I was able to relate it to myself.  I do get tired of talking so much to students – so maybe by being quiet and allowing the student to think about what I said will make the session so much easier for both of us!  Using the sticky-notes eliminated too much audio input.  (What the heck, let’s call it what it really is…. yapping!).  Each activity or question would be on a single paper and numbered:

         

                   1.  Go over vocabulary words. 

                   2.  Read about Metamorphism.

                   3.  Take a break.

                   4.  Read and answer questions 1a, 1b, and 1c.

                   5.   Put the work in your binder.

                   6.  Done.

Brady was able to process and understand more information.  We ended up with a comfortable working relationship.  Brady soon felt comfortable to tell me when he didn’t understand something or would prefer a different order for the activities. 

One other aspect of understanding Brady was how his anxiety was expressed.  He tended to leave the table suddenly, would talk to himself or wash his hands often.  I was able to back off or slow down whenever I noticed his signals.  The bonus was that the more I respected these signals, the more Brady trusted me and felt comfortable.  The more comfortable he felt, the more he was able to learn.

Trust - so important in everyone’s life.

 Albert’s Story

I worked with Albert in an elementary school during grades 4, 5 and 6.  He had been affected by Cerebral Palsy and was in a wheelchair.  On top of that, he was also affected by Aspergers Syndrome.  It was later when he was in high school that I truly understood the importance of trust and understanding how someone else thinks.

I was lucky enough to re-connect with Albert when he was in grade 9 and I was tutoring.  Transition was one of the areas in his life that could easily throw him into a tailspin.  Being prepared for the next class or part of the day was important to him.  It seems to be easier to accommodate or be aware of the importance of preparation when a student is in elementary school.  Not so in high school - the pressure to “finish work” or “be on time” is intense.   (I find this is true for many students.)

This pressure was apparent when Albert was in grade 10.  I had been visiting a support teacher at his school and stopped by to say hello to Albert. He was just finishing his lunch and had started to eat a chocolate bar that he bought from the machine when the bell rang for class.  His reaction was immediate.  He tensed up and said to his worker, “You said I could eat this!”  His assistant, Jerry, assured him that it was fine, Albert could go to class a little late.  That was fine until his Jerry went on a break and Sally, the other assistant, came to take Albert to class.  Albert once again said, “Jerry told me I could finish this.”  Sally told him that he had to get to class and then took the chocolate bar from him and put it in his lunchbox.  Albert screamed, yelled and completely fell apart.  Not only did he not be able to finish the bar, he also was not prepared to go to class.  His mind was set on the schedule that he and Jerry had agreed on. 

That year at school, Albert had difficulty coping and trusting any staff.  I know that when I do not feel I can trust someone, I am uncomfortable and cannot work under those circumstances.  For Albert it was about more than just comfort, it was about feeling he could trust what was going on – his anxiety was on high alert.

Being able to predict part of your day is important to most people.  You feel secure in knowing that “up is up”, “down is down” and when you live in the lower mainland of B.C. it will always rain. (Well, almost always!)

Being able to predict part of your day is so much more difficult for someone who depends on other people or processes information differently.   Our actions tend to be influenced by the rules, the clock, and the “powers that be”.

Let’s slow down, listen carefully, and put the child foremost in our minds.

NAUGHTY OR NICE
or
WHEN MISBEHAVIOUR IS ACTUALLY 
AN ATTEMPT TO COMMUNICATE

         Intention … I stop to think about this word.  What exactly is “intention”?  It’s an aim or plan.  Intentional means deliberate – “misbehaviour” indicates underlying intentions.  Just as a two year old is labeled going through the “Terrible Twos” some special needs children are labeled as “misbehaving”. 

         When a two year old is throwing a tantrum it is a huge message that she is frustrated because no one seems to understand what she needs.   Sometimes all she wants is someone to acknowledge her feelings.  When a special needs child starts shouting or hitting it is a huge message, “I want to tell you something and I don’t know how!”

     If you have a spouse or a teenager you know how frustrating it is when you can’t communicate and understand each other.  Sometimes our brains are just wired differently for communicating and understanding.  Imagine being a special needs person who has no way at all to communicate at all.  What strength they must have to keep trying to connect and communicate!

         To simplify – in order to bang a nail into a board you need some sort of tool whether it is a hammer or a rock.  In order to communicate, you must have the tools as well - whether it is talking, using sign language, using pictures or electronics.  You need something!  Even just “yes” and “no” makes a difference.

The Stories

Nina

        

Nina was a grade one student who was diagnosed with global delay and had drop seizures. She had some verbal skills when she was younger but had lost them before she started coming to school.  Nina would strike out at anyone near her if she was angry or had a drop seizure.  After Nina recovered from a drop seizure, there were times when she would actually crawl towards me to hit me. 

         Sometimes Nina would strike out when there seemed to be no reason or trigger.  Even before I looked into what the triggers were, I needed to give her a way to express herself without hitting.  I used a modified gesture of “go way” in sign language. I took both her hands and moved them toward me and said, “Go away.”  The motion for her would be moving two hands away from her body.  Nina responded quickly.  She started taking my hands and moving them towards me when she wanted me to go away.  I think she understood the gesture as pushing my hands away rather than moving her hands in a forward motion.    I was with her for about 6 years and throughout that time she continued to take someone’s hands to do the gesture.  I don’t know if she would have eventually learned to do the gesture without touching hands.  What was important was that she had a way to communicate.  The amount of “misbehaviour” dropped – not totally but it was a start.

       The next step was to add a gesture for “stay here”.  This came from Nina herself.  One day as she was sitting on the floor, she patted the floor.  I said, “Stay here.  You want me to stay here.”  She tapped the floor again.  I understood.  What comes next?  We added a gesture for “done” and a few others.  These were fine for simple needs but what about choices and finding out what Nina could learn?

      The easiest way to make a choice is a simple “yes” or “no”.  That opens the door for so much more especially choices.  I can’t remember who had the idea but between the support teacher and myself we decided to give Nina a way to say, “yes” and “no”.  We used picture symbols  –

a face with a smile for “yes” and a face with a frown for “no”.   

         For Nina, this was just a beginning.  The frustration and striking out became less and less.  She still would strike out after a drop seizure so we gave her some space and time to feel settled before we expected her to get up.  There were times when we couldn’t give her time to settle - when there was danger or an emergency such as a fire drill, it took two of the staff to help her move.  Explaining what we had to do only upset her more. It always bothered me that we had to take away her right to her own needs but her safety came first.

     

* It always makes a difference to ask yourself, “Why is this happening? What is causing this behaviour?”