Tuesday, August 29, 2017

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."

Sunday, May 21, 2017

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!

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.