WHAT ARE THE QUALITIES THAT HELP CARERS STRIVE AND SURVIVE

 

• PATIENCE Every new parent knows there is a huge amount of patience needed to care for new babies and small children. It is the sacrifice you make for having a family and it normally lessens as the child grows and moves into school. By that time most of us are lucky enough to get a few hours during the day to ourselves, go back to work if we choose, or spend more time with our friends and be involved in personal hobbies. If you are the parent of a special needs child that need for endless patience doesn’t subside. In fact you need ever more patience as the years pass. There are always more needs to be met. The gap between the development of peers widens, and the ability to relate to friends and family members widens also. The widening in the ease of communication comes about because peoples priorities change in relation to the circumstances in their lives. There can be no bigger change in ones priorities than the care of a disabled child.

• LATERAL THINKING We could all do with learning how to think laterally, and many people in areas such as science, medicine, architecture and others, are trained in this type of thinking. Imagine the many structural changes that are considered in the building of a mega bridge or space satellite , or the experiments that must be done to find a cure for some dreaded disease. It takes a certain ability to see a problem from all different angles in order to achieve great advancements. It takes a very definite ability to think laterally in order to negotiate the best schools for a child with a disability, find a doctor who is on the same page and listens to your views, and the ability to find strategies to help with the juggling of friendships, work goals, and relationships.

• HONESTY It takes a high level of self honesty to be able to say openly when you need help. In order to preserve relationships you need to be able to embrace your vulnerability and let others know your strength isn’t always on show. Honesty is also the most important bond you can have with those you care for. They need to feel totally safe in the trust they have in you. Their life and future depends on it. 

• A POSITIVE OUTLOOK A positive outlook is not always evident when you are overwhelmed with stress and uncertainty, but it is a fact of life that some of us are blessed with an intrinsically positive outlook and some of us are inherently negative. Even the most positive of us will fall into the black hole of depression at times. The difference is your will and determination to crawl back out. For parents of disabled children there is a stronger force than just our own will at play. We want the best for someone we care 24/7 for, and that can be a very real reason why carers go on to achieve amazing things. Time and experience gives a carer wisdom beyond their years.

• A NEVER GIVE UP ATTITUDE Often when you are trying to achieve a goal for your own benefit, tiredness, lack of motivation or skill, or any number of other obstacles, can get in the way and slow progress. At times it is easier to just give up and try something new. If you are the parent of a disabled child you don’t have that choice. You have to learn the skills and keep striving through thick and thin. You don’t have the ability to choose a different path. Your path was set when your child was born. For this reason, if a parent of a disabled child finds a cause they feel passionate about, there is very little that will get in their way.

It isn’t unusual to find carers extremely active in voluntary work. I am very active in that area myself, and some of my associates have asked just what it is I am hoping to achieve. Why do I work so hard. I must be hiding my real agenda. There must be something I am hoping to get in return. Unfortunately it can be difficult for those who haven’t come from the background of a carer to truly understand what it is they feel when they succeed in their work. In my case there is a deep seated gratitude for all I have. I have my health, and that is something carers do not take for granted. I have raised a son, although forever physically disabled, who is really someone worth knowing. I have advocated for others who couldn’t see the way forward, and helped people believe the future can be positive. And because I truly know what happiness is and don’t take it for granted, I see the magic in every day.

My friend Amanda below, understands these same principals and has shown her honesty and pride in her achievement of raising her own special needs son, Pete. With her permission I wanted to share her story and join with her in saying carers such as we, belong to a pool of talent and skills that can be drawn upon in many avenues to change our communities. It never fails to amaze me how many volunteers share our story and I will showcase more in time. As carers we need to let go of the mindset that we need to look to others to tell us how to cope with our challenges, and instead educate our communities about what caring, sharing and gratitude can do.

AMANDA STAPLEDON MAYOR OF CITY OF CASEY, AND HER SON PETE

Whilst I wouldn’t normally post my Mayoral Portrait on fb, I decided to on this occasion as I wish to honor my son Pete and to acknowledge the very reason that I am on Council and why I am fortunate enough to be Mayor for a second time.
My son has taught me so many life lessons; he has taught me about love, patience, kindness, understanding, care, consideration, empathy, admiration, respect and how to stand up for others. 
He has helped me find ways of solving problems and working with people to achieve positive outcomes.
These are qualities that I aim to display in my role as Councillor and Mayor; to care for all in our community and to ensure no-one is left behind; most of all, those less fortunate.
My son is the love of my life and I am so proud to be his Mum and Carer. I thought my life, as I knew it was over when he, as a baby became so ill and was later diagnosed with multiple disabilities. Quite the opposite is true – this was the beginning of a challenging yet wonderful journey.
I dedicate my Mayoral Portrait to my Pete and all people with a disability, their wonderful, dedicated parents and carers and all professional care givers.

 

This post talked mostly about mothers caring for a disabled child, and how their life is forever changed. It is important for parents who have negotiated the challenges, and grown in valuable ways, to share their experiences as a way to encourage those who come behind. There is another group of carers we seldom hear about. The young carers, school children who care for siblings and parents. They need immense support and it is heartening to see the N.S.W government promoting school workshops for young carers. We will go into this further in another blog.