I know we all do it – we marvel at the miracle of life. But I do believe that if you have a special needs child or are close to someone who has a special needs child, have a child or know of a child who has come into this world defying circumstances – you appreciate the concept of the miracle of life, even more. When things go right, it is truly amazing, as so much can go wrong when it comes to new life – from conception, to genetics, to congenital problems to birthing problems. The fact that all internal organs are present and work and that all limbs are accounted for, that everything is where it is meant to be and works as it is supposed to is phenomenal. Most of us when our child is born and is perfect sigh a huge sigh of relief. But in many special needs cases, problems, especially those that are neurological, only manifest at a later stage.
Some of us are never really sure what causes their problems. Some problems are caused by a complicated birth, some are due to a parent’s negligence, such as drug abuse and in some cases there is no reason – it is just life. The saying life is unfair is a saying that few probably really relate to. Those exposed to the randomness of life and powerless situations, really know what this is and how it feels.
My pregnancy, with my ASD son, was normal; I stayed away from all alcohol, sushi and cheeses. I had a normal elective Caesar. My son was born with a difficult temperament, colicky, cranky, and became over stimulated very easily. His milestones were delayed and I always had an instinct he was different.
I cannot explain the stress and doubt when you feel there may be something wrong with your child. You do not want to be alarmist or over react and often it is a waiting game. Just because your child develops differently or slowly does not mean something is wrong. But in the event something is wrong, the shock, even if you somehow knew, when you are actually confronted with the confirmed knowledge, is so overwhelming and heart breaking. I once read an article written by a father, a psychoanalyst that had an autistic spectrum child. He spoke about autism and how the diagnosis was comparable to trauma and I can fully relate to this. The emotions that come with the diagnosis of your child 3 years into their life are traumatic. In our case the trauma reminder continues and stays with us, as there is a daily reminder of the event in having to deal with my son’s problems.
I can only speak of my trauma relating to my sons condition, but I know from friend’s experiences that most parents with special needs children are faced with trauma either upon diagnosis or due to having to continually manage their symptoms, or episode and incidents around their child’s condition.
Parents of special needs kids have children with a wide spectrum of problems including; ASD, cerebral palsy, remedial needs, learning problems, cognitively impaired, downs syndrome, epilepsy. Whilst, the diagnosis helps us manage the symptoms, it does not make the journey any easier or in any way help us understand or manage the feelings and emotions that come with it. All moms and parents generally have a bonding factor. Parents of children with special needs have additional glue that binds us. We are on some varying level faced with similar emotions that are difficult to handle and cope with them so differently. Besides emotions, we are often faced with many other similarities, also of a varying degree, from learning problems, to neurologically compromised, and physical problems.
Even in the face of all of these problems and the traumas we are faced with, even though our children are not perfect, they too are absolute miracle children. For some it is because they have defied death. For others it is because of what they manage to overcome every day and throughout their lifetime. We also cannot forget the joy and love they bring to our lives, and how miraculous this feels. Ask any special needs parent and you will still see the love emanating from them, no matter how hard their circumstances.
When a fully functioning normal child is born, it is a miracle. But what really resounds with me is the miracles special needs parents are faced with day-to-day. When we as parents overcome our children’s adversities and do not let these adversities hinder us in developing amazing relationships with them, it is so special. When the child that cannot speak makes himself understood. When the child that has severe social problems is invited to a party. When a child that is physically compromised manages a physical act. When our special needs children achieve things, no matter how small, in the face of their adversities, it is simply miraculous and oh so joyous. I know I constantly focus on the big picture and worry so much about my son and what he will and will not achieve in life. I really do lose site of these small and everyday miracles. In truth, the small miracles count as much as the big ones do. All the small miracles are what builds them up and is what life is made of.
By Amber Tucker