I almost feel under qualified or fraudulent writing this blog, as I am not a parent to a child with a profound or severe disability. However, at the same time I also feel obligated to all of the inspiring mothers and loving fathers I have met who have a child with a profound disability. I have met their beautiful children. These children who have bodies who do not do what they want them to or whose mouths cannot speak what is in their mind. The parents of these children are facing a journey they never expected. Parents, whose smiles hide harrowing pain, worry and even sorrow. Some parents become apathetic to the difficulty of their daily reality.
We have often written about the gifts of ASD or higher functioning forms of ASD but I felt compelled to talk about the families who know their child is special and on this earth for a reason but cannot figure out why they were given a disability as severe as they have. What did they do wrong? What did they eat during pregnancy? What genetics do they carry? Did they breast feed long enough? The guilt starts at the beginning and at some point that guilt can deviate to a number of emotions ranging from anger, depression and denial all the way to acceptance. These are all stages of grief. Grief that comes in response to a sense of loss that these parents experience. A loss of the hopes that they held for their child’s future and what that might look like. A loss of the conversations they dreamt they would have. A loss of the video they planned on taking of their first steps. A loss of the routine they knew. Even a loss of friends … family. Deep, harrowing, life altering loss. This is the dark side not discussed enough and the dark side that isolates parents leaving them to feel alone.
Loss and loneliness are can be difficult life experiences parents of a child with severe disability face. This cocktail of emotional experience can bring us back to that grief cycle. A cycle that may revisit with the passing of each missed milestone. The cycle may lead to acceptance sooner each time or it may vary each time it rears its difficult head. As difficult as going through this grief cycle may be, it is a marker of something good, something pure and something beautiful – their love for their child. The tremendous love and well wishes a mother and father have for their child! And whilst each passing milestone can trigger emotions buried or faced it is also a complexity of living with disability that these parents are the very best at seeing their child with a disability as more than their disability. They become their child’s rock, their advocate, their voice. To their little person, their Mum and Dad is why the Earth spins, they are how the Earth spins, they are their everything. What pressure this can be on families but somewhere from deep within they muster up this super hero strength to fight for their baby.
Fighting and advocating through loss and loneliness; that there is power even in a black out. Impossible? You tell our super hero parents that! They do it! They do it every single day! What do you do when you lose something? You hunt for it, you might fight to get it back but you keep going until it is found. These parents they keep going. This acknowledgement, these accolades do not take away their sense of loss nor does it fix anything.
What can help is connecting, connecting with others who live a similar reality. Even if they just read about each other. Knowing they are not the first or the last to have to be a super hero every day, that can help a little. Add a support team to combat loneliness. This may be an allied health therapy team, a medical team, a team of friends or a team of family members. It is important to be surrounded by people who care, who share common goals and who get it. Those who get the smallest achievement can be mammoth for their child and those who are eager to join in the huge joy that comes with every step that is mastered. The key here is connection. To connect over the pain, the worry and also over the joy. When the power is lost, connect until some light can be found … no matter how big or small. Even superheroes have a kryptonite, so self-care is paramount. After all they are the reason the Earth spins!