Wednesday, March 15, 2017
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.