Wednesday, March 15, 2017

aphasiafamilies: Maturing with our challenges

aphasiafamilies: Maturing with our challenges: We are now in the middle of the 8th year post stroke.  Until June of 2009 we sailed through life on track A, however, we were derailed to tr...

Maturing with our challenges

We are now in the middle of the 8th year post stroke.  Until June of 2009 we sailed through life on track A, however, we were derailed to track B.  I've started to notice that as our kids grow older  that the concept of having a handicapped father has begun to morph into a whole new creature of its own. There is much truth attributed to the saying, "little kids little problems, big kids big problems".

As we are well aware, aphasia not only has life-altering effects on the individual but also on the family.  As health care professionals and family members focus on rehab and a multitude of therapies to get our loved one “back”, the family can easily become isolated from other families and friends.  In the beginning, following the trauma, everyone is supportive, generous, and helpful.  For us, in particular,  I don’t remember all the people who helped with making meals,with carpooling and even with transporting Ayal to his various therapy sessions.  As we live in a country without our family, our friends have become our family.  However, this presents challenges.  Over time people forget about the daily struggles we face and adjust to our being ‘different’ and admire us for how ‘amazing’ we are at how we ‘cope’.  We can’t blame our friends and it is not their responsibility to constantly be reaching out to us.  If we don’t stay connected to people, we will ultimately become isolated.  We have learned that it is imperative that we also make an extra added effort to maintain our friendships.  


What we have learned regarding friendships:     
  • Become a member: It is important to become affiliated with a community (synagogue, church, community center, country club, etc.).  As important as it is to belong to the aphasia community, it is equally vital to maintain a presence in the world at large.
  • Be proactive: Don’t wait for people to call you to invite you out for dinner. 
  • Invite friends over for dinner and for a movie at your place, if going out to a restaurant is too challenging.
  • Have friends join you for a movie, play, concert.
  • Be open:  If you don’t explain to your friends how they can better communicate with your loved one, then they won’t make an effort to do so.
Our overall experience with friends over the past 8 years is constantly evolving.  You realize who you can truly depend on, whether it be for providing emotional support or for who would drop off a casserole for dinner.


Strengthening relationships and maintaining family connections are obviously important.  For us, our primary challenges are focused on raising children.  Since our children were very young when their father had his stroke, they have learned to live with a father who is disabled.  However, it was easier when they were younger (despite overall assumption that it would be harder during the earlier child-rearing age).  The following points illustrate these challenges, however, each challenge can be coupled with a solution of sorts.  We remind ourselves that at the end of the day they are still just kids and we need to modify our expectations of them.  Ayal has learned vocabulary and target phrases in addition to learning how necessary it is to categorize topics so that the children will have fewer numbers of guesses during their communicative interactions.
 
What we are learning as our children get older:
  • Early adolescence requires constant emotional support.
  • Just being “present” and letting them vent is helpful even if we don’t offer words of support.
  • Disciplining teenagers and setting limits is a HUGE challenge.
  • When you yell at your children as they test us and push limits….it doesn’t help.
  • Our children are not as patient as we thought they would be.
  • Even though they know it’s difficult for their father to speak, it’s hard for them to wait for him to express himself.  They have homework/tests, friends coming and going, and after school activities.  These daily routines are not always “aphasia friendly”.
  • We can’t always use the line, “Please wait, it’s hard for him, you know he has aphasia”; they will become immune to that.
  • They require more explanation, reasoning, and more complex conversational interactions.
  • Having aphasia limits you as to how in-depth your explanation can be (again, here, their patience is tested).
  • Even though they make a face, roll their eyes, or push us away, they still want the kisses and hugs.
  • This requires no further explanation.


Yes, we have our daily challenges, however, we count our blessings and take note of all the good things.  When we stay positive and hopeful, keep busy and integrate into our community, our daily struggles get pushed to the side.  We may have wanted Track A, however, Track B doesn’t have to be so bad.  When presented with a challenge, we try to remind ourselves not to see it as a problem, but rather an opportunity.    

Wednesday, September 21, 2016

Religion without speech: Is that really an option?

What is religion? A widely accepted and conventional definition of religion is a set of beliefs concerning the cause, nature, and purpose of the universe, whereby individual's devote their lives to practicing religious observances which often contain a moral code governing the conduct of human affairs. The word practice refers to performing a set list of observances in one's religion.  

The purpose of this entry is not to educate people about the specific practices of various religions as I am not a Rabbi, Priest, nor Imam.  I am a religious Jew who grew up in a predominantly Christian town in Maine.  My childhood best friend is Greek Orthodox and I have worked with devout Muslim speech therapists.  In addition, I've prayed in one of the most sacred burial buildings where Jews and Muslims somehow miraculously share the worshiping space.  Needless to say, I have been greatly exposed to the general practices of these monotheistic religions. 

The underlying principle of our practices and involvement in our religion requires the use of speech.  We revere "God as our father", we shout out "Praise the Lord", we recite with vigor " may Allah reward you with good".` Whatever blessing we choose to express, we express it verbally.

It is truly unfathomable to imagine what it would be like to wake up one morning and not be able to speak.  In Judaism, when we wake in the morning we recite,"I gratefully thank You, O living and eternal King, for you have returned my soul within me with compassion - abundant is Your faithfulness!".  Seriously?  Why would anyone who can't speak want to say that?

So what happens to someone who has lost their ability to speak, perform, and practice their religion?  How can an individual who has lost their ability to speak be "grateful" that God Almighty has returned them to their soul? However, this is not my entry for Why do bad things happen to good people?  

It all boils down to responsibility.  Our responsibility is inclusion.  We pray together as a community and as a unit.  We are bonded together by our faiths.  When we separate, ignore and ostracize community members with disabilities we are breaking that bond.  What actions should we, as their friends, family and spiritual leaders, implement to help these individuals?  

The most important factor is awareness.  When we are aware we develop a greater understanding of sensitivity.  When we are sensitive we ultimately become educated.  We foster and encourage individuals who rely on Communication devices to use prayer applications which can be installed.  We proudly share and hold our prayer books upright for those who have no functional use of their extremities.  We recite the prayers alongside them so that they may hear our utterances which can prompt them to vocalize their prayers.

So I offer my reflections to my initial question; Is religion without speech really an option? 

It is an option when our spiritual leaders and their community members work together to create an environment of acceptance and inclusion. 



Tuesday, August 30, 2016

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?


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Sunday, June 12, 2016

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.

Monday, May 16, 2016

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.


Sunday, May 8, 2016

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.