Children are the most effective tool for spreading awareness

Aphasia awareness month was in June and I wonder how many people were educated and informed about aphasia? Obviously some countries are far more advanced and successful in their marketing of aphasia than others.  However, at the end of the day, we need to ask ourselves what was it that we as informants set out to achieve and did we reach our goals?

I reflect back to what I set out to do to spread awareness and I am ashamed I didn't try harder.  I could have challenged myself and set out to educate five new people everyday about aphasia, however, would this feeble attempt to educate be sufficient enough to make an impact?  Chances are: probably not.  Adults are not as easily intrigued by adults as they are by children.

Children possess this covert talent to open our eyes and enhance our awareness.  On a daily basis, our children bring home (all shoved into their backpacks) a plethora of information.  However, we often skim over the important announcements and systematically shift our attention on to the next child.  We look for OUR homework as parents: What was the homework for the day?  Any projects?  Tests? Upcoming PTA meetings? School events? Parties? [Then we realize how neglectful we are when we discover moldy, half-eaten sandwiches at the bottom of their bags].

What this all boils down to is that the routine homework assignments and school notifications will become yesterdays news and ultimately one less thing for us adults to worry about.  However, if we open their notebooks, look at their worksheets and other miscellaneous school handouts we may actually learn slightly more about their day.

Children are learning and becoming more aware each day about people with disabilities.  They may notice more people in wheelchairs, see a blind person walking down the street with their guide dog or walking stick, or even see someone communicating with their hands!   However, when it comes to aphasia they can't see it on an individual or even understand it if we explain it to them. The most effective way to educate and spread awareness is by experiencing it.  Children can experience these handicaps on a very basic level.  They are provided with an opportunity to experience the sensation of riding around in a wheelchair, walking down the corridors of their schools with their eyes covered by a scarf, and they experience the handicap of hearing impaired as they wear noise blocking head sets to cover their ears.

Imagine when your child comes home one day and tells you that there are people who can't speak because they were hurt or sick.  Imagine your child describing what they experienced when they couldn't talk at the lunch table and at recess.  Imagine seeing the excitement in their eyes as they describe how they could use an ipad or communication computer to talk to their friends.  When education and awareness enter our schools, it ultimately permeates our homes and communities.

If children are our future, shouldn't the information they learn have an impact on our awareness?


   

The invisible disability

When we meet someone for the first time we have this preconceived idea of the kind of person they are.  We judge people all the time, whether we admit to this or not, it is woven into the fibers of our DNA.  Is this individual rich or poor, religious or secular, or politically affiliated with the right or left?

When it comes to visual disabilities we also judge.  Were they disabled from birth?  Was it a car accident? Brain injury or disease?  In addition, we can see there disability so we try to offer our assistance when we see they are struggling.  We try to be more sensitive to their apparent needs.

Or so I thought.

I was on the telephone today with one of the departments of the Ministry of Motor Vehicles in Israel.  I was desperately searching for the operator who could best help me in making an appointment for Ayal to take a the handicapped driver driving test (it has only taken us seven years to start this endeavor).  Instead of pressing numbers to get to the right department I was only given the option to speak my request.  All I could think as my blood was boiling, was that this was certainly not very handicapped friendly!

A few days later, I phoned United airlines customer service.  The same story.  In order to get to the appropriate department the only option was speech recognition.  It is evident that this is a global problem that is screaming for organizations to eradicate this speech recognition requirement. 

I often ask people what they picture comes to mind when they hear the word 'handicapped'.  The #1 answer is a wheelchair-bound. The second and third most common responses are being blind and hearing impaired.  When I ask people who are wheelchair bound -- and can't use their upper extremities for communicative purposes, can't speak or write -- if they could have back one of their faculties which one would they choose?  Without hesitation, most individuals express their desire to get back their ability to speak.  

This highly debilitating disability is rarely talked about unless someone in Hollywood, the music industry, or political figure has a stroke or head injury.  Yet, there are over a million people in America alone, who suffer from Aphasia.

The fact is our society is not well informed.  There is not enough awareness despite the fact that many organizations and support groups are trying their best to get the word out to the public. Many handicapped people cannot push the buttons on a phone, but many others cannot speak clearly enough to use verbal-only cues. Organizations have to stop and consider who their customers are before offering only one means of communication. Handicapped people want and need their independence.

Is it not obvious that there is an additional disability missing from this picture which translates; "The staff is available upon request".

This endeavor is not easily attainable just as Rome was not built  in a day. I have my ideas.... but that is for another day.

Stupid choices result in great lessons learned

Frankly, we sometimes make stupid choices in life.  The following story illustrates this:

Last fall, we went on our biannual camping trip.  On this trip we went hiking with a group of friends. During most of our camping trips we always do a hike of sorts and Ayal often stays at the campsite because we know it will most likely be challenging for him.

It was a group decision to attempt a very challenging and strenuous hike; one of the top 12 picks of Israel's greatest hikes.  The Nahal Yehudiya (beautifully nestled in the Golan Heights).  I vaguely remember the intensity of the hike from a summer trip when I was 16.  For some reason, Ayal decided to join for the first section.  The trail was rocky, but overall a relatively flat terrain.  I agreed to this decision.

The first 30 minutes were uneventful.  He managed to walk on his own, however, he needed my assistance from time to time to maneuver around the baseball-to-volleyball-sized rocks.  At this point, our children and most of the people in our group were further ahead and not in our sight.  We pushed on until we arrived a crossroads; to the right, a path down to a large pool and water fall, straight ahead, the trail continued down to a river.  The continuation of the trail was longer, however, we knew the river would have been more exciting.  It meant floating in water - What could be more fun and adventurous than that?

Two men passed us and I asked approximately how long it would take to hike down to the river. There answer seemed very straight forward, 10-15 minutes maximum.  I calculated that would take us about 40 minutes if I helped Ayal down slowly.  Then, we could float down the river.  It was a bit risky, however, we had never attempted a hike with this level of difficulty since before his stroke. We decided to continue.

This is the part where you realize you should have listened to your mother hovering over you and waving her finger while yelling, "don't do this, don't do this... you'll regret it later on"!

The river.  Impossible.  The water was low and was filled with bulging algae-covered rocks.  It was a challenging enough attempt for a fit, non-disabled individual, let alone someone with the use of one hand and one stable leg.  He was able to walk on both legs but this required an immense amount of concentration when not using his electronic Bioness leg brace.  The trek along the river was arduous, stressful, nerve-racking, and exhausting.  Each rock was meticulously climbed or slid over.  Put your left foot here.  Hold on to this vine with your left hand.  Swing your right leg over the right side of this rock. Slowly release the vine from your grasp as you slide down the next rock.  Balance your weight with your left hand on my right shoulder.  This game of multi-step directions continued for two hours.

In addition spewing out directions, which may or may not be successfully executed, it is of utmost importance that you, as the leader of the expedition, try it first.   However, if you die, at least your partner will see what didn't work.  The remainder of the hike continued in this fashion.  We were focused.  If any hand or leg wasn't properly placed and planted we would have fallen.  The only words that were spoken were my instructions and his comments, "Wait. No. Yes. Ready."  There were moments when I contemplated who would adopt our children and I envisioned what the rest of their lives would look like without us.  I prayed..... a lot.  We did not hike the full 8 km and we did not make it down to the waterfalls.

When I reflect on our experience that day I know it was a stupid decision.  We could have died (this is not an exaggeration).  If we could do it all over again, I would not.  Sometimes, we need to make stupid decisions in life in order to become more responsible individuals.  We can learn from our mistakes and we can share our experiences and educate others in this process to help them make educated decisions.  I know what my limits are and I certainly know what Ayal is physical capable of.

However, I bet this is the first time in history, the Nahal Yehudiya trail has had a stroke and CVA survivor trek its path.  It is true.....anything is possible.

We finished in 5 hours.

A forced smile of relief as we reached the end of the final ascent)

The partnership of frustration and patience

Most of us experience frustration on a daily basis.  Then this emotional upset passes and a new emotional state enters our minds.  The question is;  How much frustration can one endure on any given day?

From the time we wake up in the morning till we return to our beds at night we experience an array of emotions that determine how we felt about our day.  According to the Cambridge Dictionary, Frustration is defined as feeling annoyed or less confident because you cannot achieve what you want.  However, this definition does not describe what are our reactions to feeling annoyed or not being able to achieve what we want.

If we experience the inability to truly express ourselves we may feel angry our sad, however, these emotions stem from feeling frustrated.  You want to describe your trip over vacation and you are unable to say the name of the place where you traveled.  The person you are so desperately trying to converse with is desperately trying to be patient as they may be late for something, and all you want is to share information about your trip!  You may begin to sweat, your heart races, your muscles tense.  Your entire body including your internal organs freeze.

Then the 20 question game begins:
1. Where did you go on your trip? "up, up"
2. Maybe up North? "Yes, Yes, North, Uh... Europe"
3. Northern part of Europe? "No, no, South".
4. France, no, Spain, no, Italy? "Yes, Yes!  But no, down, down Italy".
5. Southern Italy? Maybe Rome, no, Naples, no? "Boats, water, bridge".
6.  You went to Venice?  "Yes, Yes!"

Frustration. Not being able to express what you want to achieve;  not efficiently and not effectively.
It would have been a lot easier if one could have answered, "I had a great time in Venice".

It is also frustrating for the individual's family, friend, or loved one.  They want to help and they want to make it easier and less painful for them.  The fact is, it is uncomfortable for the listener or the individual involved in the conversation.  People are always pressed for time.  We are a newly improved generation, a highly evolved species producing offspring which requires various forms of medication for anxiety or ADHD to function properly.  We are the human race that embodies frustration.

This is ultimately due to the fact that we have little or no patience.  We are frustrated because we can't sit still.  We have somewhere better to be or something more pressing and urgent to deal with.  We have time constraints and deadlines.  When we have to wait for someone to finish what they want to say we clench our fists, look at the clock, or look away.  We think that by filling in the blanks to their sentences, or initiate the '20 question game' sooner, we are doing them a favor.  It will speed up the process, it will make them less frustrated and it will make us feel better, no?

Individuals who have speech limitations want and need time to communicate.  They need time to formulate their sentences or make the physiological connection between one simple word they want to say by attaching it to their mouth to produce it.  They want us to be patient.   Love is not the only thing that makes the world go around, patience is. Patience is one of the keys to unlock frustration.  For some people patience is innate, and for others it is acquired over time.  Whether it comes naturally to us, or we have to work hard at it, our patience is tested on a daily basis.  Ultimately, with or without pills, we have the power to decide how we want to cope with our frustrations.  In truth, patience is truly a virtue.

How resilient are our children?

In the face of trauma we eventually learn to adapt to our situation.  The fact is we never come out of it the same as we were before.  If we were weak are we now stronger?  If we were happy are we now bitter and sad?  What about our children? How resilient are our children after experiencing trauma?

Most children hate to be different and stand out from their peers.  Growing up in a household with someone who suffered any form of trauma, and are subsequently left disabled, will ultimately change the family dynamic.  The interaction between the children and their parents change as do the relationships with their siblings.  Often times, the roles of the family members change and children may become the individuals the parents depend on.  As parents, we try to shelter and protect our children from the terrors of the outside world.  Is it not preferred that we try to coddle and nurture them in the safe environment of their home?  Will this approach ultimately help them acclimate to the world around them?

I used to think my children wouldn't be affected by their father's aphasia.  I never imagined what life would be like for them as they began to grow and mature.  This hit me a few months ago...

I picked up my son from school with a friend and we drove to meet Ayal at his work to drop off something.  Our conversation was brief (about 3-4 minutes) and then we drove home.  On the way, my son's friend innocently asked, "Why does your Dad not speak English good?".  (Bear in mind that we live in Israel and our children's command of the English language suffers as a consequence).  My son replied, "Oh, he just jokes like that sometimes".  That was a slap in the face.  Why didn't I see that one coming?  My son was officially embarrassed by his father's speech.  His father was different.  He was different.  Kids hate to be different.

From time to time, we try to assess our children's knowledge of the unexpected and uncensored issues that present themselves at our doorstep.  This occasional 'checking-in' ritual isn't enough to fully grasp their understanding of the unpleasantries of life. How many times do we have to ask the tough questions, "Do you know why your father had a stroke?", "Do you understand that this is frustrating for him?",  "How much does it bother you that your father is different?", "Do you think this will happen to you?", "Do you ever imagine what it would be like if you couldn't talk?".

The truth is we can't fully protect them from the harsh realities in life.  They'll get another form of education from their friends, or better yet, the media.  It may occasionally be challenging for our children now but I can only hope that they will have a greater appreciation and sensitivity towards people with disabilities as they grow up.

Our children are resilient and they may get hurt, ridiculed, and embarrassed throughout their lives.  Though we can't shield them from unexpected trauma, the least we can do is love and support them as best we can.

What don't you understand?

Just as we use our words to communicate and express ourselves it is even more important that we understand what is being said.  Obvious right?

We take this for granted.  Sounds and words enter our auditory periphery, we hear them, and now its up to our brains to make sense of it all within milliseconds.

Individuals with aphasia can have difficulty with the 'processing' piece of communication (it obviously varies in each person).  There are many factors that can contribute to this difficulty of processing language:

#1 extraneous noises -  babies crying, kids fighting, walking down a busy street, crowded restaurants.
#2 complicated sentence structures and figurative language
#3 phone conversations

Ayal initially had a very difficult time trying to focus on any particular sentence the first couple of years. That complicated a lot of things.  Not only could he not express himself but now I had to change the way I spoke to him! I had to shorten my sentences and frequently 'check-in' to make sure he understood basic concepts of time, space, numbers, days of the week.  Phone conversations were almost impossible as it was imperative for him to look at my face to understand what I was trying to communicate.  We joke about husbands and wives not communicating well with each other, but if there was a prize for "the worst communicative couple", we would have received that award.

Explaining pick up times and places always got misconstrued.  "I will pick you up in front of this bank at 2pm."  Did he comprehend in front of this bank?  This could easily have been inferred as in front of the bank on this side of the street or on the opposite side of the street.  But it was still in front of the bank, no? Did he really understand 2pm?  Not always.  I learned this mistake pretty quickly as well.  It was important that I did all of the following for time related concepts:  Speak it, hold up two fingers, show him on his watch and mine and have him repeat all of these acts by himself so that I knew he understood.

This is the part where I exude my somewhat pessimistic side.

Conversing with each other became this dreaded back and forth game of ping pong, which required constant checking in, became routine but very exhausting, especially when you don't have ALL the time in the world to be supportive and calm. When our kids used to fight (of course they are all angels now), this added to our highly coveted 'calm factor', which we lacked.  How does an individual try to process language when they are distracted by their children's angelic screaming voices?

I couldn't accept the fact that it was hard for him to comprehend my words, and he was frustrated that I didn't understand him.  It almost becomes this existential crisis of feeling trapped in a crowded shopping mall desperately trying to find the nearest exit.

At the time, this was all very disheartening because  I knew he wasn't mentally challenged nor psychologically unstable.  He had and still has aphasia - that was the cold, hard truth.

The challenging part for someone whose loved one has aphasia is that WE don't always understand. We don't understand that processing language is a very labor intensive physiological process, and we take this for granted.  We don't always learn from our mistakes for the first, second, or even third time, when we experience 'miscommunications' with our loved ones, but we are aware that we need to try harder next time.  

[I highly recommend the 5 message steps of "The New Conversations Initiative" for effective communication to prompt us in filling in the blanks in our conversations with our loved ones:
          1. "When I saw/heard...."
          2. "I felt....."
          3. "because I need/want...."
          4. "and now I want (then I wanted)..."
          5. "so that..."
Sample:  When I saw the dirty dishes in the sink, I felt annoyed, because I wanted a clean kitchen, so                 that our guests wouldn't think we're slobs". ]

When we express ourselves, our brains are working faster than we can formulate the words we want to say.  We occasionally lose track of what we did or didn't share with our listener, especially when we are trying to multi-task.  We all need to check in with our spouses, children, and parents, etc. from time to time to make sure we are on the 'same page'.  This does take an extra step, an extra few breaths, one extra minute, but if we lose sight of this the consequences will cause more frustration and heartache.

The Magic of Communication

When we think about the basis for communication the concept of 'speech' stands at the pinnacle of this hierarchy of communication.  The ability to speak elevates us above the animal kingdom making us the supreme creature to walk this Earth.

When two people converse the interaction is speech-based, whether its face-to-face, on the telephone, or on a bad skype or face time connection.  We are sharing and expressing our message through the words and sounds that flow from our mouths.  Speech between two people is a masterpiece of music and a magical dance of words which play off of each other to create a symphony of communication.

However, ''Communication'' and the act of communicating is more than just talking.  We communicate with gestures, with our facial expressions, our vocalizations, and our overall body language.  It is possible and sometimes even more powerful when we utilize these aspects of communication to truly express ourselves.  Without these elements we don't connect to the person standing in front of us.

Overtime, Ayal was slowly starting to make progress in producing more words.  We started measuring progress from a monthly basis, to every 6 months, and currently, to a yearly basis.  Family and friends often commented on how impressed they were that Ayal was continuously making progress and noted how he had many more words than the last time they saw him.  Yes, it was true, he was acquiring more words, but his ability to consistently produce these words, even on a daily basis, is not 100% accurate.  In fact, speech production is often inconsistent as it is with most people who have aphasia.  One cannot compare speech acquisition of an individual with aphasia to a baby acquiring his first words.

Expressing his wants, needs, and his desire to join in conversations was comprised of a communication rainbow consisting of a medley of words, gestures, vocalizations, and facial expressions.

I'll be honest, our conversations weren't so magical and they definitely were NOT a harmonious dance of words. In fact, there were so many miscommunications it was amazing we were able to accomplish anything and maintain our sanity at the end of the day.

Ayal's ability to consistently produce all our names was like trying to find all matching socks after they've completed the drying cycle.  When he called out our oldest daughter's name he used our middle child's name, our middle child became our oldest, our son generally stayed the same, and my name took on a variety of possibilities: mommy, Ima, Julie, yeah, and a mix of our two daughter's names.  It wasn't that he was in the least bit confused or had forgotten the names.  They were cradled in his brain in some hidden hemisphere waiting to be accessed.  However, the signal from his brain to his mouth was severed so his original intent was altered and 'out of his control'.

These speech breakdowns were frustrating, NOT magical.

However, even though his output wasn't accurate, we all ended up learning and adapting to these inconsistencies.  We began to understand over time.  If humans just had 'speech' we might as well be robots.  We understood these speech inaccuracies and his intent because this is what makes us human. Isn't that magical?

I offer the following saying Í was sent recently :

We have 3 choice in life:
Give Up
Give In
     or
Give it your all

I believe each day is a new beginning, a new opportunity.  Which one will you choose today?