The teenage years

It is happening.  We have arrived.  It is dreadful, draining, and discouraging.  Our children are teenagers.  It is as bad as it has been reported.  They have become self-involved, self-governing, and detached.  The fact that their father has aphasia has added an extra layer of complexity.

Even though we have approached the 8th year post, his speech has improved more within the past two years.  In our home, there is a significant increase in eye-rolling.  Ayal feels it is very important for the children help around the house and their contribution to household chores is necessary.  Our clean laundry piles up to the height of Mount Washington on our couch.  "Help me",  "Me, one hand", "Me work, Monday, Tuesday, Wednesday, Thursday, so tired, so important", "So important family". The kids get it, they are just not interested in participating.  He still struggles with all of our family and friends names, especially when addressing our children.  Meira is Eliana, Eliana is Meira. Sometimes he gets it right, but most often not.

Setting boundaries and rules is also complicated.  I have become the 'good guy' and he is more strict. I attribute this to his vocal intensity which evidently is more powerful than mine.  The kids listen to that as they try to avoid confrontation with him.  It is challenging for him to coherently explain the ramifications of their actions if they choose not to abide by our rules.  It is necessary for me to intervene in these discussions/arguments to 'translate' his intent, even if I don't agree.  There are occasions when I don't understand what he is struggling to convey and this makes for an interesting dynamic duo of The guessing game and Parenting.

Years ago, I anticipated that by the time our children were teenagers they would be respectful, patient, and helpful.  This pipe dream has not yet materialized.  I often find myself defending and explaining his challenges more than I expected.  "Imagine if you couldn't talk", "You see how hard it is", "He needs help with just the use of one hand, could you do that with one hand?".  I admire his persistence in trying to express himself to them even when he knows they don't have the patience to listen.

This brings me to the concept of patience.  It skates on thin ice and beckons when they are at their most irritable and weary state.  How do we teach our children patience?  I find myself asking that question daily.  Ultimately, I know that teaching patience largely depends on how we model appropriate behavior as parents, which means - I need to do this better.

At the end of the day, we know we have good kids with big hearts.  They do carry a lot on their shoulders especially when they compare their father to their friend's fathers.  Even though  they strut around the house with a look on their face that reads, "I'm annoyed, don't bother me", Ayal I and know that deep down they do care and they do want to help. We simply need to remind ourselves that they are also trying to figure out their place in this world.

Despite my pointless banter and criticism of teenagers, this anonymous Australian teenager very eloquently stated the following:

               "Don't dwell on the past or the grief you hold within. Push through the tears and love the                        moment because this is something that will make you stronger in the future."

What's up with Whats App?

There are well over 1 billion Whats App users around the world affirming that it is one of the most popular and widely-used messenger applications in the world.  Our family was easily baited into becoming one of these users.

We generate a plethora of communication breakdowns on a daily basis primarily due to Ayal's aphasia. These breakdowns are a direct result of expressive and receptive language difficulties. Many families also suffer from these breakdowns on a daily basis.  The hectic schedules and the rat race in which we live do not always cater to the perfect dinner scenario of the 50's that allowed us to share our day. My parents and I have enshrined these moments in our memories.  Our family is successful in achieving this only one night a week.

Imagine, you are lost, you immediately contact a family member, however, you are unable to say where you are.  Imagine if you need to communicate with your spouse or friend about an issue when you meet with them later in the day or week.  Forget typing.  Spelling and formulating words or even short phrases are also nearly impossible.  "We need more milk".  "Call the accountant about our tax returns".  "Need a prescription refill".  "You need to call the air conditioner guy because it stopped working." 

Communicative Frustration. Again this powerful and debilitating concept bleeds into our minds as we try to express ourselves.  How can we reduce this?

Pictures are undoubtedly worth a thousand words, however, they can also provide cues for an individual trying to converse and connect with their communication partner to emphasize the main point they are trying to convey.  Whats App allows us to do just this.

CLICK. CHOOSE. SEND. When you are lost you can take a picture of the street sign or a store you are waiting in front of. You want to remind your spouse to buy more milk, so take a picture of the carton of milk in your fridge.  You are at a toy store searching for a toy for your grandchildren and are having difficulty choosing a present, so take a picture of several options to choose from in order to share with a family member to help you in making the appropriate decision.  We often forget what it is we want to share with our family members by the end of the day so capturing snippets of our encounters throughout the day provides instant documentation of our communicative intent to be saved and stored for later use.

Whats App can also nurture relationships and strengthen connections among family members and friends. This is essential as we experience these communication challenges throughout the day which can harness negative feelings and reduce our levels of patience.  We become dependent on technology to form these connections, especially when we are not together.  Understanding sentences or word phrases within a text can often be difficult to process (one of the main setbacks of aphasia). Our children can easily connect with their father throughout the day by taking pictures.  Sharing a picture of their test results (only if it is a good grade of course) instantly provides a platform for Ayal to express how proud he is by sending an emoji 😁.

Providing instruction and guidance initially for people with Aphasia or other communicative difficulties requires a lot of effort and persistence.  They may be reluctant towards implementing this technology into their day-to-day routines and may need daily reminders to use it.  Our ultimate goals are to refine and develop the lines of communication, strengthen relationships, and give them back some level of independence.  Thank you Whats App!

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.    

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. 

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.