They are not saints – they are not superhuman and they are not perfect. The parents of children and adults with intellectual challenges are just ordinary people. They come from all walks of life. They can be wealthy, economically deprived or part of the middle-class. They can belong to any religious faith or have no affiliation whatsoever. Their ethnicity is meaningless. They can be liberal, conservative or moderate in their political views. They can be any nationality on earth and their age can fall anywhere over a span of 7 decades. However, they do share one special bond that other parents may not understand. They have endured difficult experiences with their loved ones that most of us have been spared, while at the same time, they have developed a deep appreciation for what is really important in life. They have been tested and they have risen to the occasion.
For some, the life they lead was a choice. They lovingly made the decision to adopt a child with special needs or they courageously decided to go ahead and give birth to their baby after a diagnosis of Down syndrome was made. But many mothers and fathers were thrust into this role with no advance warning, and they had no idea what the future held for them and their loved one. To go from the hopeful expectation of having a baby who is perfect, to the realization that your newborn will have certain challenges to deal with for its entire life is a powerful combination of disappointment, fear, anger and finally an acceptance of who their child is and who they will become. Some parents handle this torrent of emotions better than others. Some immediately welcome their child into their family without regard for the changes that will be brought into all of their lives, while other parents go into a form of denial and refuse to believe that their child cannot somehow be made “normal” with enough effort and sacrifice.
However they react, there is a full range of human emotions that any man or woman can go through when they find out that they are now the parent of a child who is developmentally disabled. It is just the first of many times in their lives when they are going to face a reality that is different from what they expected. The adjustments they are forced to make in their own lives and in the lives of other family members are just the beginning. Their future has been altered forever. There is no going back to “before”. Most of the decisions they make in the years ahead will revolve, at least in part, in how they will affect their special needs child. A day will not go by where they can completely forget about the responsibility that has now been thrust upon them. It is a pressure that never goes away because raising a child with special needs is not an easy road. There are moments of pure frustration and searing anger along the way. For some parents there are times when they just don’t understand why they have been placed in this position. They will feel like giving up. They will feel that caring for their child is a burden that is affecting the rest of their family. These are all genuine emotions that are completely valid. To have these thoughts is not wrong. To have doubts and worries is not wrong. To sometimes wish that your life was like everyone else’s is not wrong. It just means you are having human reactions to what, at times, can feel like overwhelming circumstances.
Unfortunately, one of the most serious circumstances that must be continually dealt with is the safety of their child within society itself. Parents of those with special needs rightfully feel protective of their children, but they also know that they cannot completely shield them at all times from those who will be cruel and insensitive. It is the agonizing realization of each parent that their child can be a target for verbal and even physical abuse and that they have to be constantly on guard to make sure that their child is not placed into an unsafe situation. It is a sad commentary on the world we live in, but it is a fact that there are individuals who will take advantage of a trusting child or adult if given the opportunity.
But for all the difficulties and heartaches, there are other moments that make the tears, the frustration and the sacrifices more than worthwhile. When a child begins to communicate either verbally or in some other creative way, when they become ambulatory in some fashion, when they begin the educational process and when they are older and they find employment – these are all milestones that are celebrated with intense pride and unbridled joy by the parents who played such a crucial role in making it happen. But above all else, the one single thing that makes the journey of life with a child who has special needs so rewarding is the love. There is a purity of love that an intellectually challenged individual has for a parent. There is a complete and total trust between that child and their mother and father. It is a bond that will last through all of their lives and it will provide them with the strength, the will power and the good humor to face the many obstacles that society will place in their paths. For each intellectually challenged child that you see accomplishing far more than the “experts” ever expected, there is a loving mother, father or both who have made incredible sacrifices to ensure that their child received the education and supports they were entitled to. When a developmentally disabled adult is able to lead a life that is enriching, they have, for the most part, accomplished this with significant parental help.
In the end it comes down to this; two human beings create a third. The result of that union, no matter how society at large may label them, is a beautiful baby. They are a completely equal member of the human family. They have the same rights as you and I and they deserve the same dignity and respect as anyone else. Whatever medical or psychological terms may be applied to that child as they are growing up the fact remains that they are a living breathing human being who deserves to be loved. When it comes to their worth as a person their IQ does not matter. Their motor skills are not important. Their cognitive abilities are meaningless. They are simply a person who is alive at this moment – on this earth – with everyone else. They deserve the same opportunities, as we all do, to live the best life possible and they have the right to be healthy, safe and happy. A good deal of this will be accomplished by the love and devotion of their parents.
The men and women who love and nurture their children from birth through adulthood know that it is a commitment that lasts for a lifetime. It is a commitment they will never relinquish. It is a commitment that they will never shirk. It is a commitment of pure love. The parents are the unsung heroes who often remain in the background gently guiding their children as they struggle for acceptance and success in life. Their reward is the knowledge that they have given their all to see that their child has the best life possible. Because of those efforts they deserve our admiration and respect. In most cases it was not a life they volunteered for – it was simply the life that was handed to them – and they responded with courage, patience, compassion and dedication.
We should all embrace those characteristics for they represent the very best of humanity.