While my granddaughter was being delivered, she suffered from shoulder dystocia. She stopped breathing, and the oxygen was cut off to her brain for a number of minutes, ultimately causing her to have Athetoid Cerebral Palsy. I had no idea what this meant for my son Tom and daughter-in-law Natalie, who were just starting their own family. As a parent, I remember feeling helpless. How could I possibly help them with something that I had no experience with or knowledge about? I decided right away that at the very least, the things that I would be able to help with would be love and support. The next step for me would be to educate myself the best that I could. I decided to turn to the Internet.
How you coped
For me the Internet was a scary place. I was not the computer savvy type and feared that I would have a hard time differentiating between fact and fiction. I immersed myself in information, reading everything that I could about C.P. I learned about Hailey’s disability, about everyday therapies, alternative therapies and, most importantly, I learned from other families who were living their lives with a loved one with a disability. (I had no idea what a large community this actually is.)
I began to form relationships, mostly with parents of children with special needs. I felt like I was grasping at straws, desperate to learn anything and everything that I could that could help my children and help Hailey. Little did I know that I would form friendships and relationships that would bring me to Exceptional Family TV (EFTV) writing weekly content for one of the greatest resources out there for families who are actually living the life with children and family members with disabilities.
I am, however, left wondering if there are any other grandparents out there grasping at straws and desperately looking for information or just wanting to connect with other grandparents to help show their love and support for their families. If so, the ideal situation would be connecting with a grandparent who is close in distance and can visit often. Then you could really get to know their grandchild to be at a point that is comfortable for all of you. That is not often the reality, but you can connect with other grandparents of special needs children in other ways, such as EFTV.Maybe you are a grandparent or extended family member who is geographically distant, and you want to learn how you can help from afar. Sometimes the occasional holiday visit is just not enough to keep you close at heart and educated about ways that you can really help. Don’t let distance hinder your relationship with your grandchild.
- My advice is simple: love and support your family. Their life as they know it will be forever changed, and they need positive, caring and nurturing people by their side.
- Help out in any way that you possibly can. Even small doses would be appreciated. Maybe you will wear many hats...you can be a storyteller, a babysitter, a cookie maker and a sounding board.
- Educate yourself as much as you can about your grandchild's disability and spread the word; do not hold it in.
Were friends and family members understanding?
We are lucky enough that most of our families and friends love us enough to be able to cope with our circumstances. A lot of families are not quite as fortunate.
What outside resource helped you the most?
Boston's Children Hospital, Early Intervention
Did the situation put the family in a financial bind?
The care for a child with a disability is extremely expensive. I believe that the financial burden will always be a problem. Unfortunately, this is the case as therapies and equipment are necessary.
What favorite activities do the two of you enjoy?
Hailey and I like to read books together, we like to take long walks and we swim once a week. The warm water is beneficial for her tight muscles.