Making decisions is probably the most difficult area of caring for a loved one. I know I struggled with self inflicted guilt for many years, wondering if the choices I made were the best option. Adding to my fear was the uninformed advice those around me so freely pushed my way. I knew without doubt that I didn’t have the experience or knowledge to say outright that I knew best, whilst at the same time I also knew that many of those giving advice were more worldly wise or educated than myself. To argue a point without having a way to back up my gut feeling was a stretch too far in my early days of caring.
One of my sons, just a young lad at the time, summed up precisely how I felt about backing my decisions in a few short words when he said, “What would you know? You’re just a mum.” I spent years erasing those words from my psyche. If a 14 year old boy was concerned about his future being shaped by the decisions I made, how many suboptimal decisions would I make regarding the welfare of my disabled child I wondered.
Often the most important or life changing decisions require being made when we are the most vulnerable. Already stressed minds cannot think clearly causing procrastination, seeking advice from less optimal sources, looking for someone in authority to make our decisions for us or just making the choice that seems easiest. I can give an example from my own life that caused immense grief at the time. The choice I made led to antidepressants, guilt over many years wondering if I had done the right thing, and eventually relief. It also led to me devising the criteria by which I make decisions today. I wish I had had those tools back when I was struggling with the following decision.
By the time my son Rob, who has Cerebral Palsy, was four years old, he had already undergone several tendon lengthening surgeries. Months at a time were spent with plaster casts up to his waste. The pain he suffered was horrible. He was also attending kinder at a Spastic Centre an hour away several times a week. There he received physiotherapy which was very beneficial. I was being advised by the staff to enroll him for his schooling going forward. Rob was quite a chatterbox back then. He could count to ten, have meaningful chats, ask questions, and was no different in his mental progress than my other children at a similar age. When he spent a full day with non verbal children however, he came home refusing to speak. After a couple of days he was back to normal until the next kinder day.
His physical development was another story and almost non existent. He was totally unable to balance sitting, would be unable to crawl or walk going forward, and was undergoing one surgery after another. The decision I faced was to enroll him in a school whereby he could get the most out of his mental strength, or enroll him in a school where his physical difficulties would be more focused upon. I couldn’t ask Rob what he wanted. My friends couldn’t help me and neither could the Principal of the regular school I was considering. Our regular school had never had a child in a wheelchair attend before so the Principal rightfully had no words of advice. The Special school Principal advised Robs physio was paramount. I chose the regular school after months of sleepless nights and lengthy discussions. The journey to get the required assistance was arduous and never ending but worth it. Many years later Rob would graduate from secondary college and go on to achieve a Diploma of Legal Studies. He still however does not walk or get himself ready for the day. We have discussed that difficult decision over the years and now he is an adult he confirms it was the right path for him.
If only I had understood the value of having options, knowing where to find information, and understanding how decision making does not have to be right or wrong.
Today I understand the value of building a team of Professionals around me. People who I can gain information from in areas I am unsure of. I make sure I access the skills others have by requesting regular physical and occupational therapy reports. I always have relevant information on hand should we wish to purchase equipment, have a funding review or discuss a new goal Rob wants to set.
As the decision maker it is not your role to know everything about everything. You’re not expected to put yourself under the pressure of believing a suboptimal decision is an indictment on you. A sub optimal decision is still a decision which is way better than no decision at all. Your role is to keep gathering information, writing down options and changing direction when a better option presents itself. Your role is to find those people you feel are the most knowledgeable in a particular area and ask them as many questions as you need.
When you gather information from different sources you can compare each and then ask more questions about why the advice from one differs drastically from others, or gain confidence in the advice from alternate sources of information aligning with your gut feelings. Your decisions become an outcome of research, different aligning sources and gut feelings, rather than a decision made through the kind of fear I suffered in the early days.
You don’t need to have any experience to begin gathering information. Just a willingness to ask questions and take notes. The more choices you have when making a decision the more confidence you gain in your abilities.
When I think back to my son saying I was just a mum so what did I know, I can see clearly why he would have said that. I deferred to anyone other than myself when it came to making decisions. I was so afraid to do the wrong thing. I truly believed those is authority knew better than I did. I didn’t realize that by deferring to others I was still in fact making a decision. Often it was the wrong decision as the person I deferred to was not as experienced as I first thought. Today I am still a mum. But a mum who knows the value of the knowledge others have and how to gather that knowledge, assess its relevance and use it when I need to. In simple terms I have discovered the freedom from fear that comes with having choices.