July 23, 2024

My 5th grade year was a hard year.  My grandma was sick.  In the fall of my 5th grade year, she had been struck by a car while walking home.  This was, in hindsight, because she was already sick with what we now know to be ALSP.  Her decision making was compromised, and she didn’t use proper caution while crossing the street.  I still remember my mom receiving the phone call.  I was sitting at the kitchen table, finishing my homework.  The phone rang.  My mom answered it, and I remember her panicked, “Oh my God!”  It was a whirlwind after that.  She quickly explained what little she knew – grandma was hit by a car and was at the hospital.  She grabbed her purse and rushed out of the house to head to the ER.  My grandma was admitted to the hospital with a broken pelvis.  During her stay at the hospital, it became clear that she was ill with something that wouldn’t heal like her pelvis.  She couldn’t speak.  I still remember seeing her, sitting in the hospital bed, tears running down her face, as she tried, but failed to talk to us.  What followed was a long recovery from the broken pelvis and further decline from the neurological disease that had taken hold.

My grandma’s accident and illness took a heavy toll on my family.  My 5th grade year was marred by confusion, chaos, and conflict as my family attempted to navigate the sudden and evolving changes to my grandma and our entire family unit.  Looking back, I wish my family had been given support and resources to help us all cope with the upheaval we were experiencing.  Instead, we were left to find our own way.  My grades suffered.  It was the first and only time I have ever received a D on a report card.  That in and of itself was devastating to me.  But the reality is, in the mayhem that was our life at that point, certain things fell by the wayside.  Each of us – adults and children alike – were just trying to cope with the rapid changes and challenges.

School is starting soon.  Perhaps that is why my mind is wandering back to that difficult 5th grade year.  I am contemplating the effect ALSP had on my childhood, and I am wondering how we can help those children whose childhood is currenting being changed and challenged because of ALSP.  There is no question that when ALSP strikes, every person in the family is affected.  Children who have a parent or grandparent that is ill need extra support.  Their lives are forever altered in many and varying ways, and while the harsh reality of the disease and the pain that it inevitably brings cannot be removed, I believe there are ways to care for and fortify the children.

We live in a time where schools provide many such resources; we just have to ask.  Many schools have counselors and social workers on staff.  Some schools partner with programs like Big Brothers, Big Sisters who provide mentors for at risk children.  Schools have tutoring programs, extra curricular activities, and even after school child care.  To determine which of these are available and beneficial to your children, please reach out to the school to set up a meeting with the staff counselor or social worker.  They will be able to help you put the correct pieces of support into place.  

Sisters’ Hope Foundation has created a sample letter that can be individualized, printed and given, or emailed to your school administrators.  You can find it in our online Resource Center.  

  As you traverse life with ALSP this school year, may you find the support you need to provide your children with community, understanding, and hope.