We are so glad to hear that these suggestions are helpful. Please share your comments here on the blog so others can benefit from your perspectives. Our next two lessons learned have to do with focus and commitment.
3. Go back to Kindergarten – We are reminded of Robert Fulghum’s book, All I really need to know I learned in Kindergarten.” In it he talks of needing to live a balanced life that includes learning, playing, moving, self-care, getting rest, and being good to others. Alex’s successful rehab involved all of these. We could not just focus on PT and OT because then Speech would decline. We couldn’t just focus on all three because then academics would suffer – rehab is much more than what we do with professionals (although that is very important too). When we tried to overdue therapy and academics Alex would not get enough rest or would be too tired to eat or would not feel like she was living. Alex enjoys art and music. We put her in art class – that helped her left hand to become more useful as the dominant hand. Playing piano helped Alex to have purpose for her right hand as well as movement memory from her earlier days playing piano. We see everything as therapy, even the types of vacations we take and the choices we help Alex make for her electives in high school. We insure that she has different sorts of interactions with many people and in many environments to help to stimulate her brain in different ways. We continue to Find the balance and reflect to be sure we are not neglecting important components of rehab in our recovery efforts.
4. Where do you find the time? This isn’t minor. People often ask about how we found and continue to find the time for all that we did (do) with Alex. It is a tremendous commitment. Truly, Marc and I have devoted almost 100% of our time outside of work to rehabilitating Alex. This was a choice we made early on – to push forward as long as we continued to see progress. It became a cycle. At first we thought we would need to live like this for one year, then it became two. Even now, almost four years after Alex’s stroke – we have readjusted to think about maintaining this level of effort for seven years, or possibly indefinitely. We do not watch television or relax in ways we hear about from others. We tag-team our efforts with Alex. Marc makes dinner while I help Alex with homework and work with her on reading and writing. Marc works with Alex using the HandTutor and ArmTutor while I clean up from dinner. Even during dinner, we encourage Alex to cut her own meat using special utensils for stroke victims. We are intentional about including Alex in conversations during dinner so she practices conversational speech. It is a family commitment – it impacts us all. We will need to be cognizant of taking care of ourselves soon so that we don’t burn out. At this point, the returns on our time are keeping us going.