Becoming a parent is a daunting task filled with responsibilities
The parental role changes and intensifies if the child has a disability and is non-verbal
This places the responsibility of decision-making on the parents
It is a task accompanied by huge challenges.
Becoming a parent is a time of happiness and joy accompanied by a certain amount of fear and uncertainty. These feelings coincide with the realisation that your responsibility lies not solely with yourself, but has extended to that of another human being. Your new parental role is to nurture, protect and provide for your child’s biological, emotional and educational needs. This might seem a daunting task and can cause some anxiety and fear within a parent.
As parents it is hard to juggle the demands of a new baby along with sleepless nights and advice from others. You do question whether or not you will be successful at this new and very important role. However, when your child has a disability, your role as a parent changes dramatically. Not only does your job description undergo a significant transformation as your workload increases substantially, but so do your stress levels as well as your physical and mental health. Having a child who is non-verbal means you have to rely on different ways to determine what your child’s needs are. You become an expert at non-verbal cues, guessing and trusting your gut feeling. These are everyday challenges for parents to overcome, but when your child is non-verbal and unable to communicate their wishes, express their interests or discuss their feelings, you are handed the biggest challenge of all, being their advocate.
As a parent of a young adult with a disability who is non-verbal, I was handed the role of being his voice from an early age. This role was allocated to me simply by being his parent. I was not given the option of supported decision-making with my son, so this seems a pure luxury to me, an option I wish I could indulge in. Being your child’s voice comes naturally enough when they are babies and toddlers, since you answer all the questions from professionals, but somehow along the way this undergoes a transformation as your child is progressing through the different stages of their development. The challenge increases as you are responsible for making informed decisions in your child’s best interest, without the ability to discuss these decisions with the person who will be affected by the outcome – your child. There is the issue of human rights hanging over you and smacking you in the face from time to time as you make decisions. You have to frequently stop and ask yourself, what are the rippling effects of my decisions on my child’s life? Am I violating his human rights by making certain decisions – am I making these decisions because it is in his best interest or because it is something I want? Let’s face it, you do not always get it right. These responsibilities weight heavy on the shoulders of the advocate who is biologically and emotionally invested.
As parents our expectations may vary hugely to that of the actual ability of the child. As a parent and an advocate, we have to be able to separate their disability and their ability. When a parent has to physically take care of their child on a daily basis and assist them in their daily life skills, it is inevitable that the line between disability and ability becomes blurred. The dilemma is that you are forced to make decisions which become more complicated as your child progresses through the different stages in their life, such as moving from puberty into early adulthood. Sex education is a topic most parents dread or tiptoe around. Deciding on how to prepare my child for sex education, how best to explain it to my child and how much to teach him was an extremely daunting task. I knew I had only one chance at doing it right. I also knew that my feelings as a parent took preference when deciding how much sex education to do. As his mother I had mixed feelings for all the right reasons, but as his advocate, I completely understood that he had the right to know and understand as much as any boy his age.
As parents, advocates and decision-makers, we have to be in a position to remove our emotions and opinions and separate our wishes from what the child needs. Even if you are capable of doing so, you will still question whether that decision was what the child really needed. It is easy to connect the dots when we look back, but not so easy when we are blinded by making the actual decision. Will I ever truly know the impact of my decisions on my child, most probably not. I will, however, be aware that I have to separate my duties as a mother and my duties as his advocate. This awareness will keep me on the right path, as I battle against my heart overruling my head, making it such a challenging and necessary responsibility. As I have been stumbling my way around these responsibilities and decisions for twenty years, I have realised that the only winner in this situation should be my son.