Overcoming Feelings of hopelessness in special needs Families
This book is for all those who care a whole awful lot. I am forever grateful to all those who have cared ‘a whole awful lot’, for without these people in our lives. our family might not have gotten better. This is why I am sharing my story with you. I do not share it lightly; I share because I care a whole awful lot about the pressures that special needs families experience. I have a desire to offer hope in what others may consider to be hopeless situations.
Perhaps you are battling caregiver fatigue due to the additional responsibilities that come with caring for a special needs child or serving as a familial caregiver due accident, trauma. or mental illness. Perhaps you have friends in this situation and feel helpless in knowing how to provide support in difficult circumstances. The insights in this book is all for you.
I am writing mostly from the perspective of being a parent to a special needs child, but I believe what I have to say will resonate with others in difficult circumstances. May my story give you hope and inspiration. especially if you are a parent who loves your special needs child and wants the very best for that child. If you wish to remain connected and engaged in life and live the life for which you are purposed, if you are a parent who wants to flourish and thrive and not just survive in the community in which you live, this book hopes to draw you out of social isolation and back into the community. I desire to encourage you to put aside self-pity and embrace life to become noticed as a person in your own right, not just by the needs in your family. I want you to discover that your life does not need to be defined by the person for whom you care and their needs. You matter and have a life that counts and so does your loved one!
Read on from exerpts from the book
My son was diagnosed in 2003 with non-persuasive developmental delay and autism. At the time, I really had no clue what that meant or how life would change as a result. My world however, came to a grinding halt. Initially I resisted it as I did not want to accept the inevitable changes that would mould and squeeze me into the agenda of caring for a child with special needs. However. ‘Unless someone like you cares a whole awful lot. Nothing is going to get better. It’s not’ – Dr Seuss, The Lorax. That person to care a whole awful lot was me! I had to manage a whole awful lot and learn to accept the care of people who came to care for us a whole awful lot. But with the care comes fatigue, loss of self and even confusion over the direction in life. My life became enmeshed with my son’s life.
As I took on the role of caregiver, I fought within not to lose myself. to be who I was created to be-a vibrant. community-oriented, creative woman who wanted to remain engaged in life, connected in relationships. and professionally developed in my career. But I wondered whether this was too much to ask for the mother of a special needs child? I wondered whether it was possible to thrive and not just survive…
Leisa and her granddog, Peggy
A weekend trip to the coast to see Ian’s parents raised my first concerns. Justin was rolling around their lounge room floor when Ian’s mum asked. ‘Have you had his eyes checked? It looks like they are turning in?’ I had not noticed, but assured her I would follow up, thinking it was no big deal. But a trip to an ophthalmologist revealed that Justin had strabismus and would need to start wearing glasses from the tender age of sixteen months. I was a bit thrown when the eye doctor suggested I take Justin back to the pediatrician for a developmental checkup. He didn’t think he was like other toddlers of the same age. Even though he was still not walking. I thought he was just a late developer. He liked sliding across the tiles in his sleeping bag on his belly, but come to think of it, he was not really crawling either. Then it twigged: is not crawling essential for brain development?
One day, just like my friend. I received a call from our pediatrician. It was to let me know that our youngest was developmentally delayed and that we needed to bring him in for further testing…